Run Lacy, Run for CJD (Creutzfeldt-Jakob Disease)

Better late than.....

2008-12-23T07:05:00.000-08:00

Wow...it has been awhile since I last posted on here. Time sure does fly! When I think back on the training, blogging and of course, the marathon I still can't believe it all happened. Wowzers....it all more than exceeded my expectations. I thank all of you out there that supported me along the way. You made it a truly amazing experience!

I hope life has been treating you well these days. I definitely can't complain! I basically work, eat and sleep but I couldn't be happier! I feel so blessed to have found my calling as a Kindergarten Spanish Immersion Teacher and even more so, to have such a great group of students. I love them!

Even though I look forward to work everyday and wouldn't want to be anywhere else, I'm so relieved to be laying in my bed right now and having the whole day to myself to do nothing! Today is day 2 of my 2 week winter break and I'm loving it!! I know...no fair, but I definitely deserve it! My life is crazy! It's hard being a kindergartner everyday. I'm pooped! I constantly have to be one step ahead of the wild rug-rats and I seriously feel like I'm running around like a chicken with its head cut off! My only time to get caught up with things is when the school day is over and that usually means that my work day doesn't end until 7pm or so. I'm just trying to keep my head above water! However, like I said before I wouldn't want to be anywhere else!

Anyway, so yesterday was the first day I've had to just sit down and get caught up on some of my own personal things. The first thing on my agenda was to take care of the marathon donations. Not only my crazy life pushed things back a bit, but also I was awaiting some information about the CJD Surveillance Center. When I went to their website I couldn't find any information about outside donations. That made me think that they must receive their money from other sources...such as the government. This made me suspicious so I did a little investigating that probably should've happened long before. After quite some time, I ended up talking to the people I needed to talk to and getting all the information I needed.

I talked to Marissa at the CJD Foundation and got her opinion about the CJD Surveillance Center. She confirmed to me that NPDPSC would be the place to send a donation to help further research. All though it isn't advertised, the 2 main sources of their money comes from a yearly grant from the CDC and family donations. I was relieved that it didn't come from the USDA. With that money the NPDPSC provides free autopsies to all families that agree and do all the tests necessary to confirm the type of CJD and notify the family. With the tissues they also constantly do further research to acquire more information about CJD. Marissa actually gave me the direct line to speak with the woman in charge of finances at the NPDPSC. She confirmed all the information that Marissa gave me and even specified that I could request that my donation only be used for research expenses. She further explained to me that their research fund is strictly used for that purpose and nothing else. They have taken the necessary steps to ensure this because many families have the same concern when donating large amounts of money. The research fund is used to support lab use, tools, experimentals (like mice), etc. She gave me all the information I needed and more, including her direct address to ensure that the donation would end up in her hands.

After talking to both Marissa and Sally, I felt much better about it all. So I wrote out two checks each for $965, one for the CJD Foundation and the other for the NPDPSC and both made in memory of my father. Both Marissa and Sally reassured me that they would contact me when the donations are received with oral and written notification. I will let you all know when I hear back from them.

Anyway, even though this all happened much later than I wanted it to I think that it all worked out for the best. I couldn't think of a better Christmas present to give in honor of my father. Thanks to all of you out there for making this possible. Your support means the world!

I wish you all a very Merry Christmas and a Happy New Year!

Much love,
Lacy

Ps. I'd like to send a big thanks out to my cousin Jon who sent me a donation. Your support was another reason to why it proved worthy to be late! Thanks so much!

The marathon pics are finally here!!!!

2008-11-30T20:31:00.001-08:00

Pics from the kids marathon....So cute!!

2008-10-27T14:40:00.001-07:00

Happy Birthday Dad!!

2008-10-24T05:27:00.000-07:00

Today is my dad's 59th birthday and even though it is dark and dreary out this morning, I couldn't be happier inside. Today my class is having a party to celebrate the end of the marathon and my father's day of birth. We've been looking forward to this all week and I'm sure it will be well worth the wait. I couldn't think of a better way to honor my dad. I pray today that he feels how much he means to all of us and the love that he instilled in our hearts. The students have to run the 26th mile today so I ask that you all pray along with me that the weather cooperates. Even though this marathon for the kids has been hard work, I know that they are all sad to see it be over. It really was a blessing for us all and the kids got so excited when it was time for math, some even cried when it was rainy outside and we couldn't run. I am so proud of the kids, they truly have been good sports and had a determined, positive attitude every day. This has all turned out so much better than I could've ever expected and I can't tell you how much this experience means to me. I pray that this forever lives within the students' hearts as it will in mine. They are amazing and I will never forget this! May today be a glorious day for all!
Much love,
Lacy

Ps. Below are emails from 2 girls who have shared the same experience as me and felt called to contact me after reading my blog. What a blessing!! I pray that God works with in our hearts to stick together and continue to be his disciples fighting against CJD and all of its cruelties. I just wanted to share their stories with you to continue to spread the word. Please check out their blogs and pass them onto others you know. I thank you so much for your support. The journey isn't over, there are many others just like me out there that need your help. We desperately need to know more!

Lacy,
My mom called me today after she read the most recent CJD newsletter. She began reading me posts from your blog and I immediately had to get in touch with you. I lost my dad in February to the familial CJD and found unbelievable strength in your blog. My brother and I completed a run this summer in his honor (just like you and the marathon) and it made me smile. With it being so rare, it is hard for people to completely understand it. I have started a blog as well, as well as writing seperately in hopes of one day publishing a book. My dad was only 54, so you can understand how unbelievably tragic it all is. How are you coping. I definitely have low days, and my mom too. I would love to maybe team up and start a charity in the future or something. I dont know. But it is my passion to live for my dad. I just want you to know how lucky I feel to now have a blog to read where someone understands my head. And I cant wait to hear how the marathon went....congratulations!!!!!!!!!!!!!!!!!!!!!!!!!!

Sincerely,

Hilary Kelley
http://hilarmy.blogspot.com/

Dear Family and Friends,

Our family is holding an awareness walk entitled Footwork for CJD: A Pathway to Hope and Awareness. We would love your help! The walk will be held on Saturday, November 15 at Duvall-Rosier Field on the campus of Fairmont State University. We will hold registration at 9:00 a.m. with the walk to begin at 10:00 a.m. We will have a memorial lap followed by a balloon launch. Please let me know if you would like to help. If you are located nearby I will provide you with an actual registration packet and if you are further away I can e-mail you a file. If you are located REALLY far away you can still help us collect donations and mail them to me.

Thank you all once again for the love and support you have shown during this time. We have made a lot of progress in the fight against CJD and other prion diseases but there is still so much work to be done!

God's blessings to you always,

Nikki
curecjd@gmail.com

www.cjdhope.blogspot.com

Still spreading the word...

2008-10-19T20:52:00.000-07:00

Please don't stop!

Wow...life didn't slow down after the marathon like I thought it would. Things just got so busy at school that I couldn't seem to get ahead. I've been coming home from school at around 8pm every night and I basically just pass out on the couch. For the last two weeks I haven't done any exercise and I haven't been eating the best as well. I think I'm ready to get back to normal this week. I'm going to bring my running clothes to school tomorrow and go running around there. Here's hopin' for a good run!

I just wanted to share this article with all of you that I was hoping to post awhile ago, but now I'm finally getting around to it. Sorry. Anyway, this was the story published in the Star Tribune about the marathon that I'm doing with my kindergarten kids. There was a picture of us in the newspaper alongside the article so I hope most of you got to see it. If not, at least here is the article to read. The kids are doing great with their marathon. They look forward to running for Larry every day and the two times we had to cancel the run for the day because of the rain many tears were shed. This will actually be the last week of the marathon for the kids because on Friday they will complete the 26th mile. Like this article says, Friday is my dad's birthday and we will also have a celebration. What a great way to honor him. Truly how all of this has turned out...this blog, the support, the marathon, the kids marathon, etc....has more than exceeded my expectations. This has been an amazing journey and I thank you all for sharing it with me. I love you very much and please don't stop spreading the word. This adventure surely isn't over yet!!

ps. I will be posting pics of the marathon very soon. I will also be writing another blog on Saturday to let you all know about the marathon party and show you some pics. Please keep checking the blog!

-Lacy

West metro school briefs
, Star Tribune

MINNETONKA DISTRICT
Pupils help teacher train for marathon

The Spanish immersion kindergarten class at Minnewashta Elementary School in Excelsior helped Señorita Lacy Hladky train for her first marathon by running a kid-sized marathon of their own -- and tracking their progress in Spanish.

Hladky ran the Twin Cities Marathon on Sunday in memory of her father, Larry Hladky, who died Oct. 6, 2007, after he was diagnosed with the brain disorder, Creutzfeldt-Jakob disease. Lacy Hladky said she wanted to raise awareness of the disease and found a good way to involve her students.

"Not only does it help with numbers and Spanish, but as a teacher, you look for meaningful experiences for your kids that relate to everyday life," Hladky said.

Each day during their math lesson, Hladky's students broke into teams of four. After stretching to counts of one through eight in Spanish, each team ran a one-mile relay, or one-quarter mile each. Students didn't have to run if they didn't want to, but most of them were excited to participate, Hladky said.

The students understood that Señorita Hladky was running for her father, and they wanted to help. After each run, they shouted in unison, "Corremos por Larry" -- "We run for Larry."

Then came the math. After the kindergartners counted their miles, they calculated the distance left to complete a marathon. The students compared their finish times with each other and marked off their progress on the classroom marathon map, all in Spanish, Hladky said.

"It's given me the extra motivation when I'm out there running," Hladky said. "Not only do I think of my dad, but I also think of my kids who run every day around that track for my dad."

On Oct. 24, Hladky's Minnewashta Spanish immersion class will have a fiesta to celebrate. Then they'll sing "Feliz cumpleaños a Larry," (happy birthday to Larry) because Oct. 24 was Larry Hladky's birthday.

1 year ago from today...

2008-10-06T06:51:00.000-07:00

In this day of rememberance, I revisted the caring bridge site that I did for my dad and read all the postings from Sept.24th to today. That truly brought me back to those days and how real it all was. Eventhough it often feels like it was all a bad dream, I still remember it as clear as day. After yesterday and the whirlwind of feelings, this section of a posting was the one that stood out to me the most.

"I know this for a fact that my dad will be forever alive in our hearts. I also know that we will feel, see and hear him for the rest of the days of our lives. He will be near guiding us, supporting us, protecting us and loving us. He will never let go of us nor will we ever let go of him. He will forever be our guardian angel."

My dad stayed true to his promise to me. When he was passing away I told him that it was ok for him to go, but I just asked that when I call out for him that he comes to be near to me. The night before the marathon while I was laying in bed, I had a true connection with my dad. I cried out for him and instantly I felt a warmth come over my body. As I was shouting out, "I love you dad" I could hear his voice so clearly in my head saying, "I love you too Lace". At that moment, I knew that everything was going to be ok.

Before I knew it, my alarm went off and it was time to get ready for the big day. My first tears of the day were shed as soon as I entered the kitchen and saw a card waiting for me on the table. It was from my roommate Kim and the words within were so touching. It warmed my heart to have the love of such a great friend and the tears just burst out when I saw the amount of her donation. From somebody I know that works hard and still struggles, but yet generously gives of the what she has is truly humbling. From the bottom of my heart, thank you kim and I love you!!

The skies were gloomy as I stepped out the door and it was chilly, but I felt refreshed and ready to go. However, when I got to Michelle's house (my running partner) it all hit me that this was really happenning. I started to get nervous, shaky and short of breath. However, I didn't have much time to worry, because we were running late and actually didn't get to the start point until 5 minutes before the race. We had to use the biffy before we started and boy was that a grueling process. You hear the time clock clicking behind you and the people seem to take forever in there. By the time Michelle and I finally got done with our business, the time clock said 2 minutes and we ran towards the start line. With the crowd of thousands of people standing around me and hearing the roars of the cheers, I just broke down. What a feeling that came over me, indescribeable.

The run started out great, it was like I was running on air. To be running alongside so many people and to hear the spectator's cheers kept me going strong. However, I know that my dad was also feeling all the emotions that I was because the rain just started to pour down so quickly. Eventhough it was no fun to run in the cold rain, I just saw it all as my dad's tears. I even told Michelle, "No worries...he'll get over it soon". However, he must've had a lot to get out because it just kept on raining and raining. I guess we did prove those weather forecasters wrong, but not exactly in our favor. In my head I kept on telling my dad, "It's ok...no more crying now" and I prayed for the sun to shine down on us. My efforts didn't work so well, because by the time we got to mile 7 we were soken wet and freezing. Thoughts of doubt started entering our heads and we just couldn't stop thinking how we couldn't do another 20 miles in these conditions.

I was commenting to Michelle that we should have her parents get us plastic bags the next time we see them and she was thinking hte exact same thing. Thank goodness for Michelle's brilliance, because we couldn't wait any longer. We actually took the extra bags at the recycle bins and made holes for our head and arms and instantly felt 100x better. That definitely helped to keep the warm in and the rain out. We didn't go to St. Ben's for nothing...eh??!!! Our shoes were like lakes inside, but to be honest it was kind of refreshing. It was so funny how the spectators would cheer for us by either saying "Go.. bag ladies, garbage bag girls or trash bags". I don't care what I looked like, because as soon as I had that bag I felt hopeful again and felt the end in sight for us. I also feel blessed that the bags were clear, because people were still able to read my shirt and shout out, "Run for CJD". It especially kept me going when people would say, "Keep running for him".

I truly believe that it wasn't me running for him, but him running for me. He came over me. Through all the rain and cold he brought me through. I was flying! When I saw my mom, step-dad, uncle, step-mom and cousin I just fell into their arms weeping. What a comfort it was to see them there supporting me. At that point, I truly needed to feel their love and the warmth of their embrace. Thank yous so much!

My knee started to give me pain around mile 10, but I took some tylenol and just kept on going. However, Michelle had some really bad knee pain that didn't seem to go away. She said that she has never ran a marathon in so much pain. Even after ditching the bags at mile 15 things didn't get better and I just kept on praying for her. She actually told me to go ahead of her and eventhough it was difficult to separate, I went ahead praying for her the entire way. Not once, did I feel alone during the last 10 miles. I was off in my own world...truly on a high. Thank goodness the rain subsided by then and I could actually focus on all the people around me. Wow...what a motivation that was. The fans were great and I can't tell you how much it helped me along the way. It was also great to hear music along the course. I rocked out to YMCA, Born in the USA, Shoop, etc. Fun times!! There were definitely some interesting runners out there. I passed this man who I guess always runs the twin cities marathon and carries a tall american and veterans flag the entire way. What strength! I also passed by several people in their 70 & 80's going strong. There was even a man who was 83 and running is 300th marathon. I guess he has run a marathon in every state! Wowzers. I also talked in Spanish to two people from Mexico and that was a fun time. I told them that they were loco to come all the way to Minnesota to run a marathon. If I had a choice...I would've picked a warmer state. However, they disagreed and said it is truly a beautiful city. I guess they are right!

Another relief for me were the jolly ranchers that people were handing out. Those definitely kept my mind occupated. When I got to mile 20 and drank some water and gatorade, I actually could feel the sensitivity in my teeth. My mouth was too sugared up! It felt so good to go through the tunnel at the 20 mile mark and know that the end was in sight. However, it didn't feel good when people would say how many more miles I had left. I often heard cheers saying "you are almost done, only 4 more miles to go...etc". After running 22 miles, 4 seems like an eternity away. However, before I knew it I was at the 2 mile mark and there was my family once again to keeping me going. My step-mom and sister actually ran with me for several blocks. That was a great encouragement! Thank you! As I ran down the hill towards the capitol and crossed the finish line, I just looked around in disbelief. My dad was with me the whole time pushing me along. That wasn't me running that marathon, but him. He took over my body and we flew high. I finished in 4 hours and 37 minutes which definitely exceeded my expectations. I didn't see anybody I knew at the finish line so I kind of walked around lost in my thoughts and feelings. Michelle came in only 10 minutes later and I rushed back to give her a big hug. I cried in her arms...we made it!!

The euphoric feeling stayed with me through the rest of the day. Many of my friends and family were at my house to greet me and that was just what I needed. We embraced, we cried, and we laughed. It was a great time and the food was delicious! I even had myself 2 beers! I guess that didn't help to bring me down from my runners high. My family left around 7pm and I quickly cleaned up and went straight to bed! I was exhausted and I definitely slept like a baby.

However, as I woke up this morning I felt the after affects of running 26.2 miles. My knees are killing me and my hips ache. I can hardly walk down the stairs. Thank goodness I took today off. There is no way I would've been able to keep up with those rowdy kindergarteners today. Instead, I'm going to spend this day in rememberance of my dad and do all that I can to be present with him. I'm going to meet my step-mom this afternoon and we are going to go up to the veteran's hospital where my father spent the last week of his life. Jenifer is going to donate a painting, visit the nurses and walk around the grounds. It looks like it is going to be a sunnier day than yesterday. I will probably also stop by my sister's house to be with her and the baby. From there, I will head home and pop in the video of my dad and hopefully sleep tight knowing that he is free and happy.

I don't know how to express to all of you how thankful I am for your all your support along the way. It truly means the world to me. The marathon is over, but the journey is not. I continue to ask for your thoughts and prayers, especially for today. Please keep my family and I close as we grieve together today. My happiness fill our hearts as we remember that, " my dad will be forever alive in our hearts...we will feel, see and hear him for the rest of the days of our lives. He will be near guiding us, supporting us, protecting us and loving us. He will never let go of us nor will we ever let go of him. He will forever be our guardian angel."

Much love,
Lacy

I can't believe this is really happenning....

2008-10-04T17:48:00.001-07:00

It truly hasn't hit me yet that I'm running 26.2 miles tomorrow and it probably won't until the start clock goes off. Oh goodness! I went for a little jog early this morning to get myself ready and boy was it cold!! I'm definitely bringing little gloves to wear tomorrow. When I went to go pick up my race number at the Xcel center I also bought a long sleeve shirt to wear. I get so cold so easily and I don't like it. It especially won't be any fun if it rains. Please, please pray for nice weather and that the rain holds out until tomorrow. That would be great! Let's prove those weather forecasters wrong! Even though it was a cold run, it definitely felt good. I prayed to God the entire time to use this marathon to glorify his name. I prayed that He would help me to surrender this race to him and remember that this is not my day, but his. He and my father are running for me and they will bring me to finish line with victory. I'm not alone. May I not focus on the miles nor the tiredness, but instead be totally present in them and their amazing love. I feel so blessed!
After my run, I headed to St. Paul to get a massage. It was a bit cold in the room, but it definitely felt good. My body needed that touch and now I feel much more loosened up. I even set up a massage for Monday as well. I'm sure I'll definitely need one then.
Anyway, here I am now eating some ice cream after my yummy spaghetti dinner and writing my last blog before the big day. This journey has been a tough one and probably even more so tomorrow, but it has been more than worth it. It definitely exceeded my expectations and much of that is because of all of you. This is as much your journey as it is mine. You've been living it right along with me and helping me to make it through each day. There are no words to express how thankful I am. This has all truly changed me is so many ways. I hope this has been an adventure of a lifetime for you as it has been for me. I wouldn't take it back for anything. However, I don't know if I'll be running another marathon any day soon. When I told that to my cousin Laura Gail today, who has run 12+ marathons, she basically said you'd be surprised how addicting it can be. Wowzers...I don't know. I just pray that I see the end of this one.
Please continue to keep me in your prayers tonight and through the day tomorrow. Please also pray for nice weather!!
Much love!
-Lacy
Ps. My race number is F1505. I will be posting another blog on Sunday evening or Monday morning to let you all know how it went and how I did. Please continue to check my blog, because the journey isn't over yet!

Minnewashta Teacher Training for Twin Cities Marathon Gets Help from her Kindergartners

2008-10-01T16:28:00.001-07:00

What an amazing, but very exhausting week! I was determined to make it a low key week, but that didn't so much work out. I was all over the place and every day when I got home I would lay on the couch and before I knew it I was fast asleep. My students were especially great this week. I feel so blessed to be their teacher...I love them so very much! Not only have my students been filling up my heart this week, but also there has been a huge outpour of support from family and friends. God is so amazing! My class is now famous because not only is the article below posted on the school's website, but also in the Chanhassen Voyager Newspaper (Thurs. Oct2) and the Star Tribune (Wed. Oct8). The students screamed in excitement when they saw their picture in the newspaper. I actually found out about this article on the school website from a parent when I called to thank her for a donation. Since then, the support just came rolling in. A special thanks to the Gammill Family, Keri Freienmuth, The Johnson Family, Ryan Waibel, KC Kolstad and Julia Antonsen. Your support and love means so much. OH MY GOSH!! I just check my dad's account because I want to post what the total amount raised would be after these donations and my mouth dropped when I saw the balance. One generous person donated a total of $300 and the other $100!!! Wow! I'm in shock! I can't tell you how much all of this support lifts my spirits. I'm in tears! From the bottom of my heart....Thank you!!I continue to ask for your prayers. I'm excited to run, but I don't think the reality of it all has hit me yet and it probably won't until Sunday morning. When I do have time to stop and think about it, I do start to get nervous. I pray that God will bless all of those running on Sunday, including myself, with nice weather and motivation to finish the race with a smile.
Much love,
Lacy

Minnewashta Teacher Training for Twin Cities Marathon Gets Help from her Kindergartners
On Oct. 5, Minnewashta Elementary teacher Lacy Hladky will lace up her shoes for the Twin Cities Marathon.

It will be Hladky’s first full 26.2-mile marathon. She is running in memory of her father Larry Hladky who died nearly one year ago.

Hladky is training hard and she’s recruited her Spanish immersion kindergarten class to help! Each day, during math, Hladky’s students get together in teams of four. Each team runs a one-mile relay (one quarter-mile each).

"On the first day of the ‘kid’s marathon’, I explained to my students that we would be running 26 miles for my dad," said Hladky. "I shared my dad’s story with them and then we counted to 26 together. They were so supportive and excited to do this with me."

Hladky’s students will train during math class until they have completed 26 miles.

"It’s a great way to help them learn math," said Hladky. "Each day, we mark off how many miles we’ve run and then count how many we have left. They are also learning about distances and we compare their race times each day, adding and subtracting for longer and shorter times."

Hladky will run her own 26 miles at the Twin Cities Marathon on Oct. 5. She runs for her father, Larry, who was diagnosed with Creutzfeldt-Jakob Disease (CJD), a rare and fatal brain disorder just over one year ago. Very little is known about this disease and it is extremely hard to diagnose, so many cases go unknown. Hladky’s father passed away on Oct. 6, 2007.

Hladky’s kindergarteners are supportive and inspire her each day.

"They are so proud of themselves when they finish one more mile. After each relay, we put our hands together and shout, ‘Corremos por Larry’ (we run for Larry)."

As she trains for the Twin Cities Marathon, Hladky is raising money to help raise awareness of this disease and to help find a cure. The money will go to the CJD Foundation and the CJD Surveillance Center. So far, she has raised nearly $600.

If you are interested in supporting Hladky’s run you can send a donation to:

TCF Bank
Lawrence Hladky CJD Benefit Account #6439197637
7800 Penn Ave S
Bloomington, MN 55431

or:

Lacy Hladky
5148 Lyndale Ave S #2
Minneapolis, MN 55419

Make all checks payable to: Lawrence Hladky CJD Benefit Account.
Please write the account # in the memo section: 6439197637

Here is the article I wrote for the September CJD Newsletter

2008-09-30T10:53:00.000-07:00

Run, Lacy Run for CJD
By: Lacy Hladky

Just about one year ago, my father was a
healthy, active and happy 57 year old man
making the most of his retired life. However,
CJD crept out of nowhere and in less
than three months, brutally robbed him of
his life.

Lawrence “Larry” Hladky was truly an
amazing man. There are no words to describe
just how special he was to me and
many others. He was easy going and always
aimed to have fun with each and
every day. He was young at heart and
loved to bring joy to everyone around him.
My dad is my inspiration and I thank God
every day for the honor of being his daughter.
Throughout his suffering, he was so
patient, so humble, so strong and so full of
love for God. He made the most of the
situation, brought smiles to our faces either
by making weird looks or saying something funny out of the blue. He was such a light of the comfort
that God's love brings because even as he cried and we quickly rushed to be by his side and hold him,
he instead comforted us by saying, 'I'm happy.'

Even though it still haunts me every day to have witnessed CJD quickly take my father’s every ability
down to his last breath, the memories of his humility and love calm my heart. I will never completely
jump over this hurdle of missing my dad, but I'm slowly coming out of the stage of unconsciousness.
Before it was all just a bad dream, but now the dark clouds are starting to clear and I feel this tug at my
heart to take action by educating myself and others about CJD. I am a first-hand witness of this disease
and all its horrors, but I couldn't seem to find words to explain it to people when they asked. I often
feel that I'm alone and trapped behind all of the unknown and conflicting information out there about
CJD. Our family has been given the run around with this disease and the more I talk to others affected
by CJD, the more they recount the same experience.

Because I don’t want my dad to be lost between the cracks, I have decided to run a marathon in his
honor and all the while raise awareness and funds for CJD. I started a blog where I post messages
about my running adventures and information about CJD. It can’t be denied that CJD is increasing in
force and even more so, it is hiding from us the root of its indestructible power. We are walking around
blind to CJD and this puts us all at risk. We need to know more to protect ourselves and others from
being attacked by this horrible disease. It is time to take action. Please help me to spread the word
about CJD. I need your help because I definitely can’t fight this battle by myself. I greatly appreciate
your support!

Donations received will be split in half between the CJD Foundation to help spread more awareness
and to the National Prion Disease Pathology Surveillance Center to help with more research to find a
cure.

www.runlacyrunforcjd.blogspot.com

A special thanks to Iren Hunter and Jodi Hanson for contacting me to share your stories. Even though we have never met, we are joined as sisters through tragedy. We've lived through something that not many have or will ever experienced. It is a trial, but together we will remain pillars of strength for others who will be strickened by CJD. It is a lot closer than you may think. This is proven to me every day. Thanks for your support and love!

1 week from today....

2008-09-28T20:32:00.000-07:00

I will be running a marathon!! Oh my goodness!! I can't believe it is already next weekend. Time sure does fly. When I started the training back in June I was thinking that it would be a long summer of running, but it truly wasn't that bad. Being consistent with the training really does allow you to move forward through the miles. I still can't believe where I'm at now. Three months ago I was thinking that it was an insurmountable task, but God continues to show me that anything is possible with Him by my side. Even though I'm really excited for the marathon, I'm also quite nervous. I was thinking my short runs this past week would be a piece of cake, but for some reason my legs have been feeling really heavy. This places doubt in my mind that I will be able to accomplish 20+ more miles. Please pray for me that this week is low key and I feel refreshed and energized to shine God's light through the marathon. I'm definitely going to look up the massage schools around the area and get in for a massage at a decent price. I think that my body would really like that! I'll probably even get one after the marathon as well. Heck...I deserve it!

Just an FYI. If you are interested in watching me run the marathon, I have some good news for you. The run actually goes right by my house so I was thinking that all family and friends could bring their lawn chairs to the end of my driveway and hang out there. It should work out well, because there is plenty of space and people can even use the bathroom in the house and not have to venture a Biff experience. I was also thinking that people could bring food, drinks and meat to girl and we could all have lunch together when I come back from the race to celebrate. Doesn't that sound great? My house is at mile 8 on the course so I won't be that far a long, but that doesn't matter. I just want to make it easier for people to come. The support will be so awesome! The race starts at 8am so if you want to see me pass by my house I would make sure to be there no later than 9am. It would be wise to plan ahead, because I'm sure several streets to directly get to my house will be closed so I'm thinking you might have to do some run around. If you are interested in joining in on the fun, please shoot me an email to let me know and I can give you more information. Thank you for your continued love and support!
Have a great Monday!
-Lacy
Here is more info on road closings for that day:
Area around Metrodome:
From 5th Avenue to 11th Avenue and from 6th Street to 3rd Street will be closed at 5:00am for start line setup and will reopen at approximately 9:00am.
Course: Traffic turning onto the course will be shutdown at 7:30am. Cross traffic will be allowed to flow until the wheel chair athletes begin to approach. Once cross traffic is closed, please refer to the chart below for crossings.
Mile Crossing Points
Miles 0-1 - Use side streets to I-94 or 35W
- Head south and cross racecourse intermittently at Lake Street
Miles 3-8 - Head south and cross course intermittently at 50th
- Head to Nicollet and cross racecourse there
Miles 8-12 - If you are East of Parkway: Cross via 54th/ Diamond Lake Road
- If you are South of racecourse: Cross at 54th Street
- If you are North of racecourse: Go South to 50th, and East to Nicollet to cross racecourse
*Nicollet and 35W are North/South Crossings
Miles 12-15 - If you are North of racecourse: Cross at 46th or
42nd
- If you are South of racecourse: Cross at 56th Street
Miles 15-21 - Take nearest thru street to freeways
- Lake Street crosses the racecourse without delays

Saint Paul Road Closures:
Area around State Capitol:
Northbound John Ireland Blvd will close Thursday, October 2nd at 9:00am.
Rev. Dr. Martin Luther King Jr. Blvd. and Aurora Avenue will close Friday, October 3rd at 9:00am.
12th Street from Wabasha to John Ireland Blvd. will be closed Saturday, October 4th from 7:00am to noon and on Sunday, October 5th from 6:30am to 6:00pm
Course - Saturday: John Ireland Blvd. and Summit Avenue (to Grotto) will be closed at approx. 8:20am until approx. 11:30am.

Course - Sunday: Traffic turning onto the course will be shutdown at 6:50am with intermittent traffic allowed to cross between approx. 8:30am and 9:00am. After 9:00am, cross traffic will again be closed until approx. 2:00pm. Please refer to the chart below for available crossings.

Miles 20-21 - Take nearest thru street to freeways
- Lake Street crosses the racecourse without delays
Miles 21-26 - Take Ayd Mill or Grand Avenue into downtown St. Paul and head around Capitol area
- Ford Parkway crosses the racecourse without delays

Link to Twin Cities Marathon Spectator Guide:
http://www.mtcmarathon.org/Upload/documents/039%2D1362k%5FSpctr%5FGuid08%5Fd6rdrs.pdf

Link to Twin Cities Marathon Course Route:
http://www.mtcmarathon.org/PDFs/08StartLineMap.pdf

God...you amaze me!!

2008-09-25T07:31:00.000-07:00

Yesterday was truly a day blessed by God's mercy and I want to tell you all about it. So I went for a run after school and fall was defintely in the air. It was a great run, but also a very emotional one. The smell in the air instantly brought me back to my life last year and how outside was so beautiful and refreshing, but inside was dark and suffocating. I praised God for bringing me through the storm and giving me the light of his mercy in my life right now. As soon as I got back to school I went to my dad's caring bridge site and it happened to be that day that I wrote my first posting. My words hit so close to my heart and tears just rolled down my cheeks. It was for that reason that I decided to post that message on this blog to bring you all back to my life just one year ago. When I got home my phone just started ringing and ringing, which is kind of unusual because I rarely get calls late in the evening. At 9pm when I finally got my pijamas on and went to go lay down on the couch to watch the news, my phone starting ringing again. I was confused thinking who in the world would be calling me at 9pm at night. I looked at my caller ID and it was an unknown number, but my curiousity wouldn't let me miss the call. The shaky voice on the other line, came from a young woman who said "Hi Lacy, this is_______ and you gave your contact info to the CJD foundation and I've been meaning to call you because my dad too is dying from CJD as we speak". The disparity in her voice instantly opened my ears to listen to her story. As I sat there taking in all that she needed to get out, a feeling of dejavu came over me. It was so eary how her story coincided so much with mine. Her dad too started showing symptoms in late July. She is an only child, but in her early 20's just as well and trying to make sense of it all. She would talk about how they would take her dad out for walks and how much that consoled them all. I also took my dad on many walks in his wheelchair and for that moment it seemed like he had come back to us. The birds chirping and the cool breeze lifted his spirits so much. She also talked about the trial and hardship of deciding to place her father in a nursing home/hospice care. She too wanted to do it all for her dad and didn't want to let go. She also talked about how she couldn't believe the outpour of support that her family has received during this time. She too had people coming to her house with food and open arms to help around the house. She even commented to me how honored she felt to be her father's daughter. She too couldn't believe how many lives her dad has touched and how many others were suffering along with her. My mouth was dropped open during the whole conversation...I just couldn't believe what I was hearing. I didn't think I'd find anybody who'd know exactly what I've been through. I was her only one short year ago. I hope I was able to give her some solace as she spilled out all she was feeling. This phone call was equally a blessing for me. Eventhough we are states apart, I felt instantly bonded to her...like sisters. Her dad was just admitted to hospice care so she knows the dark road ahead of her. I just ask that you all pray along with me for her and her family. She is having many of the same scared, hopeless, empty, lost and confused feelings. I pray that God may open her eyes to his loving purpose for her dad and that in that, she may feel calmed by his passing. I pray that her family is there for her dad and for one another with compassion, but also that they may not forget about themselves. Fortunately or unfortunately, their lives will continue on so I pray that God works within their hearts to overcome this hurdle and rejoice in his mercy together. May they all be blessed with peace and love.

Thank you Lord!

-Lacy

P.s. I think this just shows how CJD keeps on popping up in this world. A few days ago a woman stopped by my classroom and mentioned that her father-in-law also passed away from CJD and that she'd like to share stories. Unfortunately, my students were still in class so I couldn't set aside the time right then and there. I pray that she visits me again some day soon. CJD is definitely more prevalent than we all want to believe. Please reach out your hands in support!

1 year ago from today.....

2008-09-24T17:04:00.000-07:00

Here is what I wrote on my dad's caring bridge site one year ago from today. I still can't believe that this all truly happened. I miss my dad so much.

MONDAY, SEPTEMBER 24, 2007 06:57 PM, CDT
Wow...I was blown away to see that already 116 people have visited my dad's site and 13 people had written wonderful words of encouragement in the guestbook. Thank you so much for spreading the word to others about this site and I hope this can bring us all together in prayer to uplift my dad.

Today seemed to be a good day for my dad. This morning I read him the article in the sherburne newspaper that featured the tennis girl's dedication mural to my dad. It was a very touching article and written so well. My dad was instantly brought to tears and myself as well. It was comforting to see his tears because that just ensures that he still hears and understands us somewhat. Those girls definitely hold a special place in my dad's heart and I know that he so wishes he could be out there playing with them. They have dedicated their season to my dad so I pray that his strong spirit guides them to many victories.

I thank God today for bringing smiles to our faces with my dad's sense of humor. When my sister Ellie was trying to help him sit up she said, 'C'mon dad, C'mon' and my dad replied, 'C'mon C'mon'. It was funny! Then later today when my sister and I were trying to slide him on his butt to sit up against the couch on the floor, he blurted out 'wedgie, wedgie'. Hilarious! If you know my dad that should comfort your heart, because that is definitely his personality shining through!

I asked my dad before I went for a walk today if he would like to join me in his wheelchair and he said, 'yeah'. So the neighbor, Rick came over to help us and we got him in his wheelchair and down the ramp fairly quickly and easily. It works out quite well and he really enjoys the walks. He is such an outdoors guy and hearing the leaves fall from the trees and the birds chirp brings him peace. So after Ellie and I came back from our little walk with dad he was pretty tired and dozed off for a little while on the couch.

Soon after a nurse came to give him a massage to help release the tension in his hands from being clenched so much and in his legs from being so stiff. You could tell that he really enjoyed the massage because he had a huge smile on his face the whole time.

My Auntie Marcia came to visit my dad for several hours this afternoon and her presence not only warmed my dad's heart, but also mine and my sister's as well. She has such a sweet spirit, just like my dad, and she definitely brings light to the situation. I love you Auntie Marcia!

I praise God for today and how he so lives with in my dad and gives us so much hope. Eventhough today was a good day for my dad, our family feels a little overwhelmed especially my step-mom Jenifer. There are usually 2-3 people here helping with my dad and we try to rotate so that everybody gets a break here and there, but Jenifer usually leaves the house to go in and work for a few hours. She also tends to be the one that we call on to help us when dad needs to be changed and that happens several times per day. Jenifer does like to get out and we do encourage her to go, but I think it is hard for her to leave because she feels like she has to be here and there is so much to do around the house. We are all trying to help one another to ease our stress, but our minds tend to get the best of us even when we are away from home. So I ask that all of you pray for my family, especially Jenifer that we may turn to God during these overwhelming times, surrender our burdens to him and trust in his love to give us strength. We need to know that we are not alone and that we definitely don’t have to do this all by ourselves

I'm still alive...

2008-09-20T19:28:00.000-07:00

well, barely! I have not been doing a good job with updating my blog and I'm sorry for all my readers out there. I hope you were not too worried about me. J/k. There is always one more thing to do when you are a teacher. I'm just trying to stay one step ahead of the kids and that takes time! No really, I couldn't have asked for a better kindergarten class. I truly look forward to every day and enjoy working with all of them. I'm just so worn out at the end of the day that the last thing I want to do is get on the computer. It kind of feels like homework and I was not being a good student by putting it off. However, I still have been keeping up to date with my training so no worries there. Recently I haven't gotten all my short runs in, but I definitely don't avoid my long runs. Today I was supposed to run 10 miles, but I decided to go above and beyond and run 12! I know....what's another 2 miles? I actually spent the night at my sister's house and she lives in Montrose, MN. I ran from her house to the next town, Buffalo which when you mention that to people from around here they really think it was a long way. It actually wasn't that bad. I couldn't believe that I was out in the middle of nowhere, basically all farmland, and there was a gravel trail almost the entire way. It was great!! I don't think the people around that area are too happy though, especially the farmers, because there were several big signs that said "condemned farmland" and "this trail represents hunger". I really don't understand their madness since the trail takes up so little space of their 20+ acres. Oh well....I'm not even going to try to understand. Anyway, it was a good run and perfect weather as well. I was a little worried about me knee, because on Wednesday when I ran 5 miles it hurt so bad but God answered my prayers and it really didn't bug me that bad.

The run was actually the easy part of the day, because after my sister and I headed off to my dad's house to meet the family and clean out his garage. I haven't been to my dad's house in quite awhile and when we pulled up the driveway and saw all of his stuff displayed like for a garage sale, I just couldn't hold back the tears....it took my breath away. That was just another hit in the face that my dad is really not here and thinking about getting rid of his things gives me a feeling of abandonment from him. It was a very emotional and difficult day for all of us. The question of the day was "why did he keep this?" or "I wonder what he used this for". My dad basically kept everything and accumulated a lot because he loved to go to auctions. What I don't understand is that he always lectured me about having too much junk, especially when he'd help to move me in during my college years. I never heard the end of it. However, he definitely didn't practice what he preached and I can see him just laughing at all of us now. We basically took all the stuff out of the garage, sorted it and organized it back into the garage. By the time we were done, we were full of dust from head to toe and it was getting dark. My sister and I didn't leave with much since were not big fans of tools, fishing stuff, snowmobiles, car parts, and other man stuff. I know that things are just things and my dad would tell me not to be attached to them, but it helps to fill up a void inside when they are close.
Anyway, so it was a VERY long day! Now it is time for bed and I'm definitely going to sleep like a baby!
Take care,
Lacy

We had several fallers today!

2008-09-17T15:08:00.000-07:00

I got many notes from the parents saying how much their children loved the running and didn't stop talking about it. God never ceases to answer my prayers! When it was time for math, they all shouted "Yippee time for running"! Eventhough it was a nice day outside, we didn't have such a nice run today. One of the first students up to run for her team fell in the beginning and her teammate had to take the place for her. He ended up coming around the last corner absolutely sobbing and saying, "I didn't want to run first". It took him quite awhile to calm down. He is quite the competitive one and doesn't like to lose. Then, one of the last students to run fell down half way around the track and scrapped up her knee and hand. She was a trooper though and continued to run until the end. The kids are so good at motivating their teammates....it's great! I love this part of the day....it automatically brings a smile to my face to see the kids out there giving it their all for my dad, someone they never knew. We ended again today in circle giving each other around of applause and shouting, "Corremos por Larry". I can feel my dad smiling down from heaven! The winning team got 10:10 so that just goes to show that they are improving. I can't wait to see what their time is at by the last mile! Please pray for my students that they continue to be excited about running and that no serious injuries happen.
Much love,
Lacy

The kids marathon has begun!

2008-09-15T15:08:00.000-07:00

My students were so excited when it came time for math. Many of their parents told them about what we were going to talk about today. We all sat down on the rug and I displayed a picture of my dad and I on the smartboard. One of the girls quickly said, "that's your dad and he is in heaven". I looked at her with a smile and confirmed her answer. I told them that my dad was very sick with a bad disease that took his life. I was saying this all in spanish (but with a lot of actions) so I don't know how much they understood. I told them that I'm running a marathon for my dad because there is very little help for the disease and most of all, because he was so special to me. One of my students then said, "we know you miss your dad and love your dad so much" and tears began to well up in my eyes. I wanted to see more of my dad so I popped in the slideshow that I made of him for his celebration service. Even though the video brought tears to my eyes, the kids lifted my spirits with their cute comments about me when I was little and they definitely enjoyed the music (they were singing along!). It definitely touched my heart when one of my students commented about one of the pictures with my dad saying, "You are so beautiful Señorita Hladky!" I put together a slideshow to kick off the marathon so that the kids would get a better idea of what they were going to do. They basically run a relay, one time around the track, and they run with their students at their table. We talked about how many times around the track equals a mile and how many miles are in a marathon. We counted all all to 26 and did some stretches. The kids were so excited to head outside for the run and I praise God for the nice weather! I couldn't have asked for better!! The kids did such a good job and they cheer for each other the whole time, some even run up to the runner to give them support as they come around the last corner. Even though they know we are doing this for my dad and for fun, they are very competitive. The winning team finished in 10:30! What good sports! We circled up at the end and gave each other a round of applause. We put our hands together in the middle and on the count of three shouted, "Corremos por Larry" (we run for Larry). God is amazing!!
Much love,
Lacy

Wow...what an amazing accomplishment!!

2008-09-14T18:49:00.000-07:00

My running partner told me on Friday that she wouldn't be able to run with me this weekend so I acted quickly. I knew that it would be quite boring to run 20 miles by myself. Plus, I prefer to do the long runs in places that I'm not familiar with so that I don't know how many miles I have left. Anyway, I actually asked one of the women that I met at the pampered chef party if she wouldn't mind if I joined her for a long run this weekend. She called me back right away excited for me to run alongside her. She is actually training for the Nike's womens' marathon in California and her husband is training for the Twin Cities. She was scheduled to run 18 miles and her husband and I had to run 20. I had met both of them at the party on Thursday and they were very easy to talk to so I wasn't too worried about running with them. I actually was excited to get to know them more and for a new running route! We actually started our run at 7am in the morning and even though it was kind of chilly to start, I'm glad we went early because it started to rain towards the end of our run. We ran on the Carver County trails from Chanhassen to Minnetonka. Our turn around point was near 494...we were definitely a ways from where we had started. Running this trail was great, because it is gravel so good on the knees and very nature-like. There were definitely a lot of hard core runners out and it was great to cheer them on as we passed each other. I surely hope that the day of the marathon is similar as today. It wasn't too hot or too cold, just right and the rain at the end was very refreshing! It was great to run with Amy and Chris, we had some pretty interesting conversations. It's funny the things you can talk about when you are running with someone for 20 miles! Amy left us at the 9 mile mark and turn around so that just left Chris and I. Amy had told me prior that I should bring my ipod, because Chris isn't much of a talker when he is running. However, he definitely chatted up a storm with me and I didn't mind. He actually pushed me quite a bit. We were running 9 minute miles or under....we were booking it! It was not until we stopped for water in Excelsior at the 17 mile mark that I started to feel pain in my knee. After 1 mile it was really hurting so I slowed down a bit, but kept on going. The last mile was definitely painful, but I ran to the end. We finished 20 in 3 hours and 20 minutes so if I can stay at that pace for the last 6 miles than I should be end at less than 4 1/2 hours. I'm going to shoot for that goal!! Wish me luck! Right as soon as we got back to Amy and Chris' house I iced my knee and boy did that feel good! I really hope that my knee heals this week. It kind of worries me because it surely hurts to go up and down stairs. I think I'm just going to take it easy for the next 2 days. Chris went right away to get all of us a Caribou mocha and even came back with hamburgers for lunch! That was just what the doctor ordered!! What a great day and what a great run! It is amazing all that God provides for me! Please continue to keep me in your prayers that I continue strong with my training and especially, that my knee heals.
Much love,
Lacy

Spreading the news more and more...

2008-09-12T13:26:00.000-07:00

Last night I was talking to some teachers and parents at a Pampered chef party about my idea to inform my colleages about my marathon and the parents of my students as well. I didn't know if this would be the best thing to do, but it has been on my mind for awhile. The advice that I received from the people at the pampered chef party was very positive. They said if it were them they would love to know more about the person who spends so much time with their children during the day. When I decided to do the marathon the idea of incorporating it into my teaching was one of my first ideas for support. The students would run a 1 mile relay in teams of 4 every day until they total 26. Thus, in the end they would run a marathon just like Señorita Hladky. This will help them with team-work, learning numbers, and many other meaningful things.
Anyway, yesterday I decided to just go for it so this morning I typed out an email to my colleagues about my story and also included a letter to my students' parents. Many of my fellow teachers approached me today to give me a hug and express their condolences and support to me. Some even mentioned that they are planning to be there on marathon day to cheer me on! How great!! I mentioned to the other teachers that they can have their classes join mine to run a marathon and I got several who'd like to hop on board! I pray that this all works out and that the weather cooperates and so do the kids. I also pray that the parents' don't have too many concerns with their children doing this and are actually excited about the whole thing. I sure am! I think it would be a great thing for them, but then again...what do I know? The marathon for my students will begin tomorrow and I asked in my Friday newsletter that the parents give their children a little heads up about it and also, what happened to my dad. I'm going to bring the slideshow that I put together of my dad and show it to my kids before I start the lesson tomorrow. I plan to incorporate the marathon into the math hour of each day. I also put together a little slide show to kick off the marathon and it features many kids running. When I was searching for pictures for this slideshow I went straight to the Twin Cities marathon site. They actually offer a training program for classroom teachers! I guess you can register your class for a program at any time and become eligible for great incentives. I did just that!! Even though this is all happening so fast and I don't have things that well planned out, it just seems like the Lord is making them fall into place for me. Please pray for me and my students that this whole idea becomes a success! Please also pray that it generates more awareness and support for CJD.
Much love,
Lacy

5 miles...no big deal!!

2008-09-10T18:08:00.000-07:00

I was feeling a lot better today, but oh my goodness were my students chatty. They are now understanding what it is like to be in kindergarten and I think they are having lots of fun. They definitely all get along well, but a little too well...they don't leave each other alone! Crazy kids!! So needless to say, I was ready to go for a run today. I did have a meeting with my staff that also made my mind start rolling so I knew the run would clear things up a little. It was definitely a great run. It's crazy to think that I run 5 miles like it's nothing...such a piece of cake! I probably was doing 9 minute miles or less...I was bookin' it! The weather was nice...very much like fall. I can't believe summer is almost over. Sad :(. I do love this cool weather, but I don't like how winter is just around the corner. Please pray for nice weather for me on marathon day. Rain or shine, cold or hot...I'll be there, but it would definitely make it a lot easier on me if it were nice weather. Thanks for your continued support!
Blessings,
Lacy

Urgh...I'm sick :(

2008-09-09T18:55:00.000-07:00

So it was a busy weekend with very little sleep and I think my body is starting to rebell. It is worn out! I was feeling a little plugged up on Sunday evening and then bam, it hit me Monday morning. Even though I had a hoarse voice, I still was able to keep it together for my students. However, I jetted out of school right away to head home, put in a movie and go straight to bed! I definitely needed that! I'm feeling a little bit better today, but my throat is still scratchy and my entire body is achey. I was thinking about heading out for a run today, but I think I should let my body rest a little bit more. This weekend is going to be a long run and I don't want to be totally drained. It is no fun being sick. I definitely don't feel on top of my game. However, I'm thankful that it is just a cold and it too shall pass. In my times of despair, I remember my dad and all that he endured with so much humility and dignity. Please pray for me that I too will find strength in my weakness.

Much love,
Lacy

1 month...

2008-09-06T17:36:00.000-07:00

1 month from yesterday and I will be running the marathon!! 1 month from today will be the 1 year anniversary of my dad's passing. I can't believe where the time goes. I just wish llife would slow down a bit, but I am glad that I'm getting closer to the marathon. I like how the training disciplines me and keeps me in shape, but it is a lot of work now that school has started. It is a good escape for me to go out for a run at the end of the day and it actually relieves my stress so much. It has just been a bit difficult to stay on track. However, I did successfully run 18 miles today! I still can't believe it! Wowzers! I ran from the University of Minnesota on the greenway to uptown and around Lake of the isles, Lake Calhoun, Lake Harriet and to home. My roommate had to give me a ride back to my car. It was such an amazing run! It wasn't too hot nor too cold out...just perfect! I prayed before my run because I was feeling pretty tired from the long week and I specifically asked for energy and strength. God never ceases to be at my side. I couldn't believe how good I felt and how I could just keep on going. Before starting this whole marathon training, it seemed like such a stretch and almost unreachable to think about running 18+ miles. Now, I know that it is possible!!

Yippee!! Week 12 finished and only 4 more to go!

-Lacy

CJD is not reportable in Minnesota and many other states...

2008-09-05T16:03:00.000-07:00

US 'Mad Cow' Legal Action
7 Jan 1999 Press Release
Andrew Kimbrell, D'arcy Kemnitz,
Attorneys At Center For Food Safety

Legal Actions Filed To Force FDA, CDC, To Combat 'Mad Cow' Type Diseases In People, Wildlife And Livestock In The United States.
Terminally Ill Utah Hunter, Age 30, Could Be The First Victim Of U.S. 'Mad Deer' Disease.
'Mad Cow' Type Diseases Are Already Killing People, Deer, Elk And Sheep In The U.S.
Washington, DC -- Today, Thursday, January 7, 1999, two formal legal petitions were filed demanding that the Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) act immediately to monitor, regulate and prevent 'mad cow' type diseases in the United States. These diseases, known as Transmissible Spongiform Encephalopathies, or TSEs, are killing people, deer, elk and sheep in the United States. Petitioners include the Humane Farming Association, the Center for Food Safety, a group of United States CJD victims and their families and consumer, farm and animal protectionists.
The demand for immediate government action is given added urgency by the extremely unusual case of a thirty-year old Utah man, R. Douglas McEwen, who is now terminally ill with CJD, a 'mad cow' type disease in humans. Mr. McEwen hunted deer and elk; it is feared he may have contracted CJD by eating or handling deer or elk infected with 'mad deer' disease. Additionally, there is industry and governmental concern that as a frequent donor Mr. McEwen may have contaminated blood products internationally.

Mr. McEwen and his wife Tracie are petitioners in today's legal actions. His fatal disease underscores concerns that current federal regulations are grossly inadequate to prevent and monitor potential animal and human epidemics in the United States.

The family of 'mad cow' type disease, TSEs, include numerous strains and have different names in different species. The best known strain is British Bovine Spongiform Encephalopathy (BSE), dubbed 'mad cow disease,' which has now spread into the British human population as 'new variant Creutzfeldt-Jakob Disease' or nvCJD. So far 33 teenagers or young adults are confirmed dead or dying of nvCJD. Since the disease has a virtually invisible incubation period that might last decades, it won't be known for many years whether the final toll will be in the dozens, hundreds or thousands of human lives.

In the United States efforts to identify, monitor and prevent human and animal deaths from TSE diseases have been grossly inadequate, despite the fact that people, deer, elk and sheep in the U.S. are dying from these diseases, known as Creutzfeldt-Jakob Disease (CJD) in people, Chronic Wasting Disease (CWD) in deer and elk, and scrapie in sheep.

CJD in humans in the U.S. appears to be often misdiagnosed as Alzheimer's or other types of fatal dementia, and seems much more prevalent than admitted by government agencies. Given the very long invisible incubation period of this 100% fatal disease, and that fact that it can be spread by infected medical instruments and is almost impossible to kill by heat and disinfection, and the consequences of failing to identify the disease are extremely serious.

The first legal petition demands that the U.S. Centers for Disease Control (CDC) aggressively look for CJD in humans and make CJD a reportable and monitored disease. This petition is also being filed in all fifty states with the appropriate state health officials.

The second legal petition demands that the Food and Drug Administration (FDA) close serious loopholes in U.S. animal feed regulations which currently allow types of cannibalistic feeding practices known to cause and spread 'mad cow' type diseases in animals and humans. For instance, current U.S. regulations allow calves to be fed milk replacer containing cattle blood protein, and pigs to be fed back to pigs and cattle. U.S. sheep infected with scrapie, a 'mad cow' type disease, can be used for pet and pig feed in the U.S.

Commenting on today's legal actions Bradley Miller, National Director of the Humane Farming Association stated, "TSEs represent a potentially devastating threat to both human and animal health. Our government's response to date has been shamefully inadequate. These legal actions provide a blueprint by which federal and state agencies can act decisively to prevent a TSE epidemic in this country."

Dr. Michael Hansen, Research Associate of Consumer's Union commented, "The current increase of TSEs in wildlife and humans shows that the time for effective prevention may be running out. The federal agencies must immediately take action to avert what could become a very significant public health problem."

Andrew Kimbrell, public interest attorney and Director of the Center for Food Safety stated, "Given what we know now, it is unconscionable that the CDC is not strictly monitoring this disease, and that the FDA is still allowing the feeding of blood and other animal by-products to animals. The federal agencies are obviously putting the interests of agribusiness companies ahead of their duty to protect the public from this terrible and fatal group of diseases. We will go to court if necessary to ensure that the agencies do their job in protecting human health and animal welfare."

Currently, efforts to track the disease have been close to nonexistent. For example, 24 of the 50 states mandate the reporting of CJD. Therefore, many cases might be going undetected, unreported or misdiagnosed. If more states made CJD a reportable illness, I'm sure there would be more clusters detected across the United States. My dad did his fair share of elk hunting as well and I know he very much enjoyed eating elk burgers. Since Minnesota does not report CJD, my dad's case will go unrecognized in the records deaths due to CJD. This is not right!!

Please help me to find more answers and more support!

Much love,
Lacy

Source: http://www.mad-cow.org/jan99_petition.html
States Where CJD Diagnosis is Reportable by Law: http://members.aol.com/larmstr853/cjdvoice/report_cjd.htm

1st day of Kindergarten!!!

2008-09-04T18:16:00.000-07:00

Well..things definitely didn't slow down today. What a crazy day!! I don't know where it went! Wowzers! To add to it all, we even had a fire drill! What a thing to throw at kindergartners on the first day of school, especially when they don't understand their Spanish-speaking teacher half the time! No really...I couldn't have asked for a better day. There was only 1 cryer and nobody peed their pants!

I still can't believe it that I didn't even get nervous. Not only did I not have time to worry, but their big hugs and cute faces made everything so much better! I seriously have such a great group of kids and they are darn cute!! They behaved much better than I had ever expected for their first day of school. Such bright kids!!

I know that each day brings new challenges and new successes, but I'm going to keep my fingers crossed that we continue to go up hill during this journey. God is so amazing! I have been praying that he confirm to me that this is where he wants me to be. He has made it seem like the obvious path for me with how this whole teaching position at Minnetonka came about. However, teaching is definitely an art and not all are cut out for it. I was worried that would be me. God proved me wrong! When I'm with kids and teaching I am totally in my element. It just feels right! God spoke to me through others today when fellow teachers came up to me to comment on the good report I have with the kids. They see what he sees! Thank you God!

My dad would be so happy to hear me say "I can't wait to go to work tomorrow!"

Tomorrow is a new day with a new start, but it could have a very different ending. I pray for patience, flexibility and love. Those are the key ingredients!!

Much love,
Lacy

And the fun begins....

2008-09-03T20:33:00.001-07:00

I have to get better at managing my time. It has been difficult to stay up to date with my blog now that teaching is taking up almost all my time. I'm hoping that things will slow down a little next week as I start to get in the groove more of what exactly it is that I have to do as a teacher!!

Wish me luck! From tomorrow on out I have to be a kindergarten teacher every week Monday through Friday!! Scary! He he! These last two days I've been doing individual assessments with my students to see how much they already know in English. I had to tip my hat off the parents because they are doing an awesome job with their children. I have such a smart group of kids! All of my kids know 20+ of the upper and lower case letters and over 1/2 the sounds as well. All of my students know their numbers and how to count, two of them even wrote their numbers up to 60! Wowzers! Quite a change from last year with my students in St. Paul. I just hope they catch on to Spanish as well as they have with English. I'll have to be very creative in finding ways to challenge them. Oofta...lots of work!

It's strange, but as I was running my 5 miles today I realized that I'm not nervous at all. Tomorrow may be a different story, but overall I mostly feel calm, confident and excited. If you know me, the first two are generally not true. I pray that God continues to confirm to me that this is where he wants to use my talents and that all I need is already with in.

It has been hard last week and this week remembering where my life was 1 year ago. I was brought to tears when I drove to school on Tuesday and the song that immediately played on the radio was "brown-eyed girl". That was my dad's song for me and I missed his presence so incredibly much at that moment. However, I also knew from the song that he was right there with me, reassuring me that I'm not in this game of teaching alone. I have some great people above working on my side! I couldn't be more blessed. Even though I'm easily brought to tears these days, they are more tears of happiness than sadness. I'm so grateful!

Thank you for your continued love and support!

I love you all so very much!

Hugs,
Lacy

I will survive.....

2008-08-31T19:53:00.000-07:00

as long as I know how to run, I know I'll stay alive!!

He he!

I had lots of motivation when I headed out for my long run today. The main reason why is because I did some balancing of bank accounts beforehand and I saw that somebody donated $100! Last week my sister commented to me that she was feeling a little down not seeing the "total raised" increase, but I told her not to worry God will prevail when we need it the most. He surely did today! Thank you so much to the generous donor. Your support means so much!

I met my friend Michelle at 9am and we quickly headed out the door to start our run. We ran with her dog for the first 6 miles and then decided to drop her off at home because it was way too hot for her. I was feeling good as we started the 10 mile loop, but the hotness and lack of water really began to catch up with me at mile 12 or so. The pace did slow down a little, but we kept on going. It definitely became a mental game for the last 4 miles. The whole time I was asking my dad to give me energy as I pushed myself, because I knew that even though it hurt it surely didn't compare to all that my he endured. My bright morning and the memory of my dad's strength brought me successfully to the end of 16 miles. Oofta!

I am proud of myself to think of how far I have come since my training started in June. My dad continues to show me day in and day out that he is proud of me. I also have to thank all of you out there for your support.

Michelle and I plan to run a race next weekend that goes around Lakes Harriet and Calhoun. It is a total of 15.5 miles so it will be a good warm-up race for me. I can't believe that the marathon is only 5 weeks away! How crazy! Time flies!

Wish me luck, not only as my training becomes more intense but as I start teaching on Tuesday. I will have a lot going on in my life. Please pray that I will be able to find balance so that I won't grow weary.

Much love,
Lacy

"Black Saturday" determined not to revisit...

2008-08-30T19:26:00.000-07:00

So today is what my family likes to refer to as "black saturday", the day the kids were told about my dad's fatal illness. One year ago was truly a dark day and it makes me sick to my stomach to remember the hopelessness and helplessness. I can't believe how much time has passed. It often feels like this never happened, like it was just a bad dream. Other days it feels like it just happened yesterday and it is so vivid in my mind. However, to reflect back on where I was then to where I am now all I can do is praise God!

I wasn't able to post a message on Friday, but I decided to take the day off and do things for myself. I needed the pick me up so I went for a 2hour+ bike ride and once again, it was absolutely beautiful. As I biked I my mind was solely on my dad. I was off in my own world talking to him...he was right by my side. I felt so comforted...like I was floating on air. What a great ride! Then I decided to go visit my mom and on my way to her house I stopped at my nephew's day care to spend some time with him. It was at that moment when he looked into my eyes and gave me a big smile, that I once again felt my dad so near. Love just radiates off my nephew. He fills my life with so much light! My dad is definitely embracing us through him. It is so amazing!

Anyway, I was determined not to relive the past today, but instead make it a new day...a "bright saturday". I certainly didn't sleep in, but woke up at the crack of dawn to go get my hair cut. I needed a new, more sophisticated do. It definitely feels refreshing to have a change. Then, I went into school and worked for several hours in my classroom organizing my files and I definitely didn't get as far as I wanted to, but that's ok. I know that I can't do it all. I called it quits and headed over to a coworkers house where we had a little get together. It was fun chatting with my new work friends and eating good food. It was even more fun when we decided to head downtown to go salsa dancing. My mom and sister have always told me that I don't have rhythm, but I certainly rocked it on the dance floor. I can't say that I knew what I was doing, but I was having fun. However, I had to leave fairly early because I knew I needed sleep for my big run tomorrow.

Please be praying for me tomorrow. I will be running 16 miles with my friend Michelle and I'm a bit nervous about it. I have never ran that far and this week has been really exhausting as it is...I don't know if I'm up for it. I need your prayers.

Much love,
Lacy

Ps. I want to send a big "thank you" and "hug" to Betty K. who is an amazing woman that I met while being a volunteer in Guatemala. Since then, she has been a great spiritual mentor not only with my dad's illness, but also with teaching and all. Your card touched my heart so much and lifted my spirits. It was a reminder that I needed to why I'm doing this. Some days life just gets too far ahead of me and I sometimes feel like I'm getting nowhere, questioning if I'm doing a good job with all of this. Your encouragement and support was so needed. Thank you from the bottom of my heart!

Took the words right from my mouth...

2008-08-28T20:18:00.000-07:00

I received this moving email today from Nikki who contacted me several months ago after reading my blog. CJD took her mother almost around the same time as my father. It is strange how only a year ago we were walking the same journey, different stages, but with the same horrible end. As the 1 year anniversay of "black Saturday" approaches, the day the family was told of the fatal diagnosis, all that I can think of is my dad's incredible humility. After reading Nikki's message below, I can see that her mother was and continues to be such an inspiration for her just like my father is for me. She took the words from my mouth! Few people have been to where we have been with CJD. We need to be here for one another and others who will one day endure the same fate.
-Lacy

Hello to my CJD family,

Today marks one year that my Mom, the woman who meant so much to so many people, was taken from us all due to this horrible disease. I have journeyed down a horrible path over the last 18 months or so, beginning with her illness and then trying to find my way through this world without her. I've said that this was my year of survival. Just making it through has been a miracle. I now begin my year of healing. I hope that it won't take the full year to then begin my years of hope and joy. My Mom taught me to find the good wherever I can and to give it away to others. I try hard every day to do that, some days better than others.

I believe we are meant to learn a lesson in everything that happens in our lives. As Mom's illness was progressing, I really struggled with that. What kind of knowledge is to be gained by watching a woman so full of love and mercy suffer such a cruel fate? What good can come from a person like this dying and leaving so much good work unfiinished? I grew to realize that the lesson was not her illness, not her death. The lesson was, and always will be, her life - the causes she believed in, the way she loved and forgave, the way she always left things a little better than before she was there. That is her legacy. I only hope that my life will be as meaningful.

I reach out to you all this evening because you all have been in a situation similar to mine - all of our situations are unique in their own ways but you all know this beast, CJD. In losing my mother, I have found all of you. This is a blessing beyond measure. You all inspire me and challenge me to never give up in this fight for treatment and for cure. I wish that we never had to meet under these circumstances but I feel honored to share this journey with you all.

I wish you love, peace and healing,

Nikki

No worries...I'm still alive!

2008-08-27T07:41:00.000-07:00

Wow...I don't know where the time goes. It's crazy! I've been consumed with so much at school by the time I get home all that I want to do is sleep. I don't even have the energy to turn on the computer to update my blog. It's like I'm a walking zombie!

However, with each day that passes it is getting better. I went for a 5 mile run on Tuesday around work, because I desperately needed a break. God continues to bless me left and right because there are some awesome trails right near my work. They go for many miles and they are gravel so good on the knees. I ran from my school to the city of Excelsior and back and that was about 5 miles. Such a beautiful run and it was shady too!

I took it easy today because I had a pretty packed day and then open house. I met all of my kids except one, and all of their parents too. Most of them are precious and well-behaved from what I noticed, but there were a few that seemed a bit out of control. That's typical though. They are all so adorable! It was pretty interesting for myself and probably even more so, for the parents that I could only speak to them in Spanish. There was a lot of improvising going on. It was pretty comical, but all went well. I am nervous for it all, but I'm even more so excited! It's going to be a great year!

Thank you for your continued love and support!
-Lacy

The testing begins....

2008-08-25T20:40:00.000-07:00

One year ago today my father was admitted to the Veteran's hospital to get a further examination of his ailments. Little did we know that he would be there for 1 week undergoing test after test after test. It started out that he may have Lyme's disease, then menengitis, then ....the list went on an on. He was like a freak of nature to the doctors. Something they have never seen...a mystery to be solved.

How is CJD Diagnosed?

There is currently no single diagnostic test for CJD. When a doctor suspects CJD, the first concern is to rule out treatable forms of dementia such as encephalitis (inflammation of the brain) or chronic meningitis. A neurological examination will be performed and the doctor may seek consultation with other physicians. Standard diagnostic tests will include a spinal tap to rule out more common causes of dementia and an electroencephalogram (EEG) to record the brain’s electrical pattern, which can be particularly valuable because it shows a specific type of abnormality in CJD. Computerized tomography of the brain can help rule out the possibility that the symptoms result from other problems such as stroke or a brain tumor. Magnetic resonance imaging (MRI) brain scans also can reveal characteristic patterns of brain degeneration that can help diagnose CJD.

The only way to confirm a diagnosis of CJD is by brain biopsy or autopsy. In a brain biopsy, a neurosurgeon removes a small piece of tissue from the patient’s brain so that it can be examined by a neuropathologist. This procedure may be dangerous for the patient, and the operation does not always obtain tissue from the affected part of the brain. Because a correct diagnosis of CJD does not help the patient, a brain biopsy is discouraged unless it is needed to rule out a treatable disorder. In an autopsy, the whole brain is examined after death.

Scientists are working to develop laboratory tests for CJD. One such test, developed at NINDS, is performed on a person’s cerebrospinal fluid and detects a protein marker that indicates neuronal degeneration. This can help diagnose CJD in people who already show the clinical symptoms of the disease. This test is much easier and safer than a brain biopsy. The false positive rate is about 5 to 10 percent. Scientists are working to develop this test for use in commercial laboratories. They are also working to develop other tests for this disorder.

Obviously, more research needs to be done for CJD. It was such a draining experience for my dad to spend 1 whole week behind the cement hospital walls, not seeing the light of day. It was even more painful to be put through numerous tests with no definite result and stupified looks on the doctors faces. Worst yet, to walk out of the hospital with a terminal "your on your own" diagnosis. All the while, feeling very sick. It just tears at my heart to remember back to these days and all that my dad went through. Yet, he always remained so humble and so calm. Amazing!

Please help me to find out more about CJD. This is not for me nor my dad, it's for you, your family, your friends. One may never know.

-Lacy

A little overdue...

2008-08-24T19:46:00.000-07:00

Wow...what a draining week! I sure hope next week slows down a little. My weekend was basically spent at the school putting together and organizing my classroom. For being a first year teacher, I sure do have a lot of stuff. I'm sure my dad would would call it junk, like he always did when he helped me to move during the college years. However, one person's junk is another's treasure! My mom said that I better stay at Minnetonka for awhile or find a guy to help me move all of my stuff, because she sure isn't going to be of much help. My dad was always the one to help me move, now I'm sure he is smiling down from heaven happy that he gets to get out of this one.

I didn't do as much mileage as I should've this week, but that's ok. There was no way I would've been able to run more with how exhausted I was when I came home from teacher orientation. I'm glad I gave my body a little bit of a break, because when I ran 10 miles today it felt so good. It was crazy, but the run went by so quick. I definitely could've kept on going. It's wierd to think that 10 miles is an easy run for me. Crazy! My running partner, Michelle says that I'm doing a very good job with my training. We finished 10 miles in under 1 1/2 hours so that means we were running 9 minute miles. I think that's pretty good.

I'm going to be more vigilant this week of sticking to my running. I need to remember to take time for me!

I'm going to place the order for the t-shirts this week so this is your last chance to tell me if you'd like one. As of right now, only 3 people have expressed interest in a shirt. Please let me know.

Blessings,
Lacy

Ps. A little note to my dear Marsha. Thank you for your heartwarming comment. It must have taken you a long time to get all caught up with my blog. Thank you for taking the time to see what I've been up to. Your prayers and thoughtfulness are very much appreciated!

There is not enough time in the day...

2008-08-21T15:17:00.000-07:00

I did stick to my plan and slept in a little bit and went for a run this morning. It was still hot and sticky out and my legs felt incredibly heavy, but I did it! For some reason, it was a much more difficult run than my 14 mile run last Sunday. Strange!

I wanted to lay on the couch the rest of the day, but no such luck. I had Smartboard training for 3 hours at Minnetonka. I am very thankful I went. I learned a lot of stuff that will be beneficial for me in the upcoming year. The Smartboard is sure a great source of technology to have in the classroom. I feel so blessed!

I did get lots of work done when I went to my classroom after the Smartboard training. I feel much better about the layout. Now all I have to do is organize my desk and decorate my classroom. I do have a busy day tomorrow, but hopefully I can organize my desk. I know I'm crazy, but I will be going to the school this weekend to do my decorating. I just can't seem to think of another time to do so.

Please pray for me that I can stick to my running plan with all that I have to do here at school. I do plan to run 10 miles on Sunday with my running partner Michelle. It's hard to find time for myself these days. Please pray for me that I will be able to better manage my time and not put so much stress on myself. My body and my brain can't handle it.

I hope all of you are enjoying your last week of summer!

Much love,
Lacy

I can't catch up....

2008-08-20T19:03:00.000-07:00

I'm officially "out of it" with everything that I have going on right now. My brain seems to stop working around 4pm and it sure takes a long time to get it going in the morning. It doesn't help that I'm yawning almost every minute of the day. I'm sure every teacher would say they felt the same way during their first week of training. The training isn't all that bad, it is all the other stuff like setting up my classroom, communicating with parents, preparing curriculum, organizing stuff, etc that is suffocating me. Yesterday and today I spent several hours in my classroom sorting through things and trying out different layouts. Don't get me wrong, I was having a lot of fun doing it...I barely even stopped to take a drink of water. However, I've had the intention to go running both days but by the time I get home I feel so incredibly exhausted. I walked in my house today around 6:30pm and went right into my room to put on my pajamas and take a nap. It definitely felt good, but here I am now trying to catch up on things again. It doesn't stop. With that, I ask for your prayers. May I remember that I can't do everything and surrender to God all that is burdening me. May He give me the strength and energy to go on and reassurance of when to be done and go home.

With that, I have decided to go for my run tomorrow morning. I was going to go in to school and work on my classroom a bit more, but I'm pretty sure that will only make me feel worse. Tomorrow morning I'm going to focus on me so that I can have a more productive afternoon. I don't want to stress out my brain any more than I have to. If you read below, it definitely has a altering effect. To this day, I do believe that it was the stress of my grandpa's passing that triggered my dad's sickness. My dad died only 4 months after his father!

Why do we need to give our brains a break?
Numerous medical and psychological studies have suggested a large proportion of visits to the doctor's office are due to psychological problems, many the result of acute or chronic stress.

Stress is a normal process we use to appraise and attempt to cope with emotional threats and challenges. Stressors--events and situations--may be blamed for the uncomfortable effects of stress. But the way we perceive stressors determines whether stress is experienced as a panic or a challenge. While normal stress protects the body in times of threat, prolonged stress may potentially damage the body, including the brain.

When a stressful situation occurs, the body reacts with an outpouring of hormones (adrenaline, norepinephrine, and cortisol). These hormones increase heart rate and respiration, send more blood to skeletal muscles, dull pain, stimulate the immune system, and turn sugar and fat into energy.

The stress response is the body and mind's normal mechanism for addressing stressors. In most cases, the response occurs for a limited time to aid the individual in dealing with a specific stress situation then the body returns to a normal, non-stressed state.

Sometimes, however, the presence of sustained stressors--abuse, combat, perceived unrealistic pressures, illness, anger-producing situations--can have markedly damaging effects on the body and the brain. Robert Sapolsky at Stanford University, and others, have investigated stress and health and report that a prolonged flood of stress hormones can actually cause shrinking in certain brain areas, particularly in the hippocampus.

A major role of the hippocampus is in memory. It is not unusual for persons with prolonged stress to report forgetfulness and difficulty learning. A hopeful discovery is that certain portions of the hippocampus can recover once the stress response is reversed.

Since catastrophes, life changes, conflicts, and the myriad things that produce a stress reaction are a part of most people's lives, it is how we learn to interpret and control stressors that is crucial.

Coping with Stress
Exercise strengthens the body. It can reduce the experience of stress, depression, and anxiety. Dozens of scientific studies have demonstrated the relationship between exercise and mood. Exercise promotes arousal and relaxation, and improves quality of sleep. These conditions help the body recover from the stress response.

Relaxation through meditation, biofeedback, and a variety of other activities and techniques promotes lower blood pressure, slower respiration, reduced metabolism and muscle tension. These counteract the effects of stress.

Social contacts, friends, and family relationships can help in creating emotional trust, support, and relaxation. Even caring for a pet can provide significant emotional comfort that helps reduce stress.

Attitudes of confidence, positive ability to solve problems, and balance allow the cycle of stress response to resolve now and then instead of being sustained.

Healthy lifestyle--not smoking, minimal use of alcohol, balanced nutrition and weight control, and slowing down and taking time to smell the roses--promotes a sense of peace and control over one's life. Stress is often related to the anxiety caused by a feeling of being out of control.

Source: www.brainsource.com/stress_&_health.htm

Tell me more about prions!!

2008-08-18T21:04:00.000-07:00

Small regions within prion proteins regulate their ability to cross species barriers

Researchers have known for decades that certain neurodegenerative diseases, such as mad cow disease or its human equivalent, Cruetzfeldt-Jakob disease, result from a kind of infectious protein called a prion. Remarkably, in recent years researchers also have discovered non-pathogenic prions that play beneficial roles in biology, and prions even may act as essential elements in learning and memory.

But although prions have received a great deal of scrutiny, scientists still don't understand many of the most fundamental mechanisms of how prions form, replicate and cross from one species to another.

Now, through studying non-toxic yeast prions, scientists at Whitehead Institute have discovered small but critical regions within prions that determine much of their behavior.

"These findings provide a new framework for us to begin exploring properties of prion biology that, up until now, have proven difficult to investigate," says Whitehead Member and MIT Professor of Biology Susan Lindquist, senior author on the paper, published in Nature.

Proteins are the cell's workhorses, and they need to fold into complex and precise shapes to do their jobs. Prions are proteins that start out normally, but then at some point misfold - rather like an origami swan that comes out looking and acting instead like a vulture.

But prions have another characteristic that enables them to wreak havoc. They recruit other, properly folded proteins into misforming along with them, a process Lindquist calls a "conformational cascade." In many organisms, this conformational cascade creates long fibers called amyloids. (The brains of animals that have died from prion infections are literally packed with amyloid clumps.)

In order to glean insights into the mechanics that enable amyloid formation, Peter Tessier, a postdoctoral scientist in Lindquist's lab, used peptide arrays - glass slides covered with thousands of tiny protein fragments. Traditionally, these arrays are used for finding binding sites within well-behaved proteins. Here, Tessier designed the arrays so that he could observe protein folding and amyloid formation in real time.

Tessier covered the array with peptides from baker's yeast and then added prion protein to the array, also from the same yeast species. He found that a small cluster of peptides recruited the prion proteins to misfold into an amyloid structure. This region of the protein, which Tessier called a "recognition element," constitutes about 10 percent of the prion. Tessier repeated this experiment with peptides and a prion taken from pathogenic fungi. The results were the same.
While this prion is a laboratory construct not found in nature, these findings provide researchers with a new way to approach old questions, such as why some prion diseases can jump from one species to another but others can't. Tessier and Lindquist say it is likely that natural prions contain more than one recognition element, and recognition elements can slide into a neighboring region. Many external factors can determine which recognition element is activated, in turn influencing the downstream behavior of the prion.
FINDINGS

Scientists at Whitehead Institute have found that small regions within prion proteins are responsible for their infectious properties. Moreover, these regions regulate the ability of prions to cross species barriers.

RELEVANCE

Prions are highly robust and infectious proteins, most notable for their central role in bovine spongiform encephalopathy, commonly called mad cow disease. But very little is known about how prions form aggregates of malformed proteins that ultimately result in disease. This study provides initial insights into how prions recruit and distort healthy neighboring proteins.

"These findings are remarkable for two reasons," says Lindquist, who is also an investigator for Howard Hughes Medical Institute. "For one thing, this is the first time that these peptide arrays have been used to study protein folding. We've taken this platform to a whole new level. Also, we've seen just one small part of this prion inducing proteins to fold. This is an entirely new concept."

Earlier research from the Lindquist lab, published in Nature in 2005, identified the amino acid regions where prions connect with one another to form amyloids. Those interaction regions turn out to be the same regions Tessier identified as recognition elements - further confirmation that these regions are key to prion activity.

Tessier and his colleagues plan to further investigate this process in mammalian prions, such as those responsible for mad cow and Cruetzfeldt-Jakob diseases, as well as in other non-prion proteins that can also form amyloid structures.

Source: http://www.medicalnewstoday.com/articles/70530.php

Wow...what a run!!!

2008-08-17T19:34:00.000-07:00

I had a hard time getting up this morning and I was yawning the entire way as I drove to my running route. However, as soon as I started and my blood starting moving I felt great. I ran along the Mississippi River and it was such a beautiful day! It was steamy out, but the path was shady for the most part and there was a little of a breeze. I listened to praise music the whole time and prayed that God would give me strength and energy to finish the 14 miles. If you know the cities you'll understand how long of a run I did. I started out on Frankline Ave and ran several miles into the Fort Snelling National Park. It was quite a hefty run, but I could've definitely gone further. There was a strange thing that happened towards the end of the run when I ran across the Franklin bridge. There were all these cop cars blocking the street and lots of people stopped to gawk. Everybody was looking over the bridge and I couldn't really pick out what they were looking at...I sure didn't see anything. However, I saw that the cop was standing by a pair of sandals and I came to the conclusion that somebody must've jumped off the bridge. I did ask a spectator, but she didn't seem to know much. What a crazy thing to do, but please pray for this person that he or she makes it out ok.

Also, once again I'm going to ask for your prayers for me as I start my first official week as a kindergarten Spanish Immersion teacher for Minnetonka. There is so much to learn and so much to do. Eventhough I'm very excited to start, it is all very overwhelming and suffocating at times. Please pray that I stay calm and centered through it all.

One last thing. Please let me know if you are interested in purchasing a t-shirt and what you would like it to say (loved one or father, walk or run). I need to get a rough guestimate for an order in asap. Thanks so much!

Much love,
Lacy

New life...

2008-08-16T19:42:00.000-07:00

Uncle Ray went home peacefully early Friday morning. I'm glad that I went to go visit him when I did. It kind of feels like he was waiting for me, just like my dad waited for him. I didn't think it would all happen this fast, but I couldn't be happier for him that he is finally free. Please continue to pray for Uncle Ray's family. I know that they will really miss his heartwarming presence, I know I will.

Also, please send some prayers out there tomorrow morning for me because I will be running 14 miles. I have never ran more than 13 miles so I'm a little bit nervous that it will all go ok. I had such a great run last weekend...I just pray that God confirms to me that I can do this. I'm going to go to bed pretty soon here so that I will be all rested up. Wish me luck!

One more thing, I need to know if any of you out there would be interested in purchasing a shirt and if you want, you can order it with "Loved one" instead of "father" and you can even replace "run" with "walk". Please shoot me an email and let me know. I don't know of the exact price yet, but the cost will include for the shirt, printing, for Holli and a little donation to my dad's account. It will most likely be more than $20 I'm thinking. I just need to know how many are interested so I can place an order and they can give me a bulk price.

Check out this Fox 9 News Story. It is frustrating how much CJD goes misdiagnosed and incorrectly reported. Even though only 8 have passed away in Minnesota from CJD....I'm pretty sure the actual number is much higher. It is here and we need to know more!
Misdiagnosis: CJD

Last Edited: Thursday, 14 Sep 2006, 3:13 PM CDT
Created: Wednesday, 13 Sep 2006, 5:17 PM CDT

AP

FOX 9 -- Her daughter say their mother sparkled in her golden years, but when Shirly Rassieur turned 68 -- it was like someone flipped a switch.

She lost the ability to walk and talk. Suddenly, she couldn’t figure out how to work the thermostat.

The doctors diagnosed Shirly with Alzheimer’s, even though some of the symptoms didn’t fit. Shirly didn’t just slip away -- her decline was abrupt and brutal.

When she dies in July of last year, her daughters demanded an autopsy.

They found their mother dies from Creutzfeldt-Jakob Didease, or CJD -- often referred to as a human form of mad cow disease.

Like British mad cow disease, which is transmitted through contaminated meat, the disease is caused by the same microscopic and indestructible protein.

No one knows what causes cases of CJD in the U.S., which afflict about one in a million.

The Minnesota Health Department has been tracking CJD deaths since 1991. Last year eight people died from the disease, but the health department bases that number on death certificates.

Shirly Rassieur’s death certificate still says Alzheimer’s -- her doctor refuses to change it.

It’s a disease that stole the sparkle from the woman they love, and her daughters can’t help wondering how many other cases may be misdiagnosed.

Source: www.myfoxtwincities.com/myfox/pages/Home/Detail;jsessionid=60D2D47D0B02B08E3FD1CD1EAF6614F9?contentId=876930&version=1&locale=EN-US&layoutCode=TSTY&pageId=1.1.1&sflg=1

No vacation for me....bummers!!

2008-08-14T23:05:00.001-07:00

I found out last night that my new teacher orientation actually started today!! I was thinking that the ball started rolling on Friday, but I was wrong and boy am I glad I realized that. After my last night class, I headed out to sing karoake with my good friend Tracee. It was a night to celebrate not only because I successfully finished my two summer courses, but also because it was Tracee's birthday. I sang "Can't fight the moonlight" and "Let's hear it for the boy". I had a lot of fun singing the second song and I plan to sing it to my future husband one day. If that ever happens...hehe!

It was an early night though, because I had to be in Minnetonka for training at 9:30am. It was a good first day and I learned a lot of beneficial information, but at the same time everything I have to do and know is so overwhelming. Please pray for me! Tomorrow will be an even longer day...I have to be there from 8am-4pm oofta! Anyway, after my training was over, I picked up my grandma Hladky to go out to lunch and visit my great uncle Ray who is in the hospital.

Just a little bit about Uncle Ray. He is truly an amazing man. He took care of my dad and his siblings a lot when they were young. My dad often talked about Uncle Ray and how much he loved him. He saw him like a second dad. Uncle Ray is over 90 years old and even though he has an ailing heart, it couldn't be more full of love. When my dad was in hospice care, Uncle Ray found a way to make it all the way up to St. Cloud to visit him. It was after his visit that my dad went to be with the Lord. He was waiting for Uncle Ray! I actually wasn't in the room when my dad passed. I knew I wouldn't be able to take it so I had been outside, walking by the river and listening to praise music on my ipod. When I walked back into the hospital, it was the first time that my heart didn't race thinking that someone was going to tell me that my dad passed. He went at the one moment when I didn't expect it. So it came as a shock when Uncle Ray who came walking towards me to give me a hug and let me know that my dad has been freed. It was truly a special moment. That just goes to show how special my great Uncle Ray is.

Anyway, Uncle Ray is currently in hospice care at methodist hospital and preparing to make his way to heaven. He has had complications from the heart meds that he has been taking for many years and they are causing him to blead internally. His body can't recover not only because of his age, but because he doesn't want to fight for life. He wants more than ever to go home! I felt a huge peace come over me as I sat by his side, holding his hand and saying prayers for his comfort and peace. Even though he couldn't verbally respond, I knew he could hear me by the squeeze of his hand. It does all kind of seem eary that he is in a similar end of life situation as my dad and around the same time, but it also couldn't feel more right. The more that I see my loved ones pass away, the more I adjust to the reality of death and it not being all that scary. This may be wierd for some of you that I say this, but witnessing the passing of life is a relief. We are here temporarily, it is just a passing ground to our eternal home of everlasting life in heaven. Why is death viewed with such darkness? It is unfortunate for us who are left behind, but I couldn't be happier for Uncle Ray that he will make his journey to live in complete happiness. He definitely deserves it!

I ask for your prayers for my great Unlce Ray and his family. May that feel God's love comfort their aching hearts at this time. May his peace warm them from head to toe.

As for my training today, I went rollerblading for 2 hours. I got sprinkled on here and there, but it was very refreshing. My legs were sore and I could feel a blister coming on strong, but I kept on truckin'. I knew that this workout will be nothing compared to Sunday when I have to run 14 miles. Please keep me in your prayers that all goes well. This will be the most that I have ever ran at 1 time. Thank you for your continued thoughts and prayers. Remember...don't stop spreading the word.

Much love,
Lacy

Angry survivors pursue CJD mystery, seek government support, research

2008-08-13T12:14:00.001-07:00

These stories took the words right out of my mouth!!

Please take a look...
www.pvc.maricopa.edu/puma/may05/cjd_schwan.html

Here I go again....

2008-08-12T21:01:00.000-07:00

Yesterday was my first day of vacation and I was planning to do my blog post in the evening and then things got really hectic. I ended up going over to my sister's house so that I could watch my nephew. They are both very sick with ear infections and chest colds. My sister and I commented how it is so hard to see someone who is so young and so helpless be sick. However, I reminded her that dad was in a very similar position, but worse. We must be thankful that it is only a cold and it too shall pass.

I thought that I might not get a chance to run today, because it started to poor when I headed for home. However, God cleared the sky and provided for another great run for me. I felt so good running today...I definitely was going at a faster pace. I even decided to run on the bike path around Lake Harriet so that I could get in a little bit more distance. However, I got a few nasty stares from bike riders and even one was so gutsy to tell me, "wrong trail". I just kept on going, but there was something inside of me that wanted to see that woman again and say, "By the way, I know I'm on the wrong trail..I'm just going for more distance." Oh well...I don't need to explain myself to her. Anyway, that was kind of upsetting, but I just kept on going and praising God for the health He has given me to run. I feel so blessed. I once again saw those people practicing a play outside and a part of me wanted to stop and watch, but that probably wasn't necessary. Another interesting, but amazing run! Thanks God!

I ask for your prayers for my sister and my little nephew. May God restore them back to health so that they may live out their every day for him. Please also pray for me that God continues to bless me with good health to successfully complete this marathon for Him and for my dad.

Much love,
Lacy

8th week of training finished with success!!

2008-08-10T18:33:00.001-07:00

I said so many prayers Friday night that God would give me the strength and energy to have a better 12 mile run than last weekend. He never proves me wrong! It was absolutely amazing! I woke up at 7:30am and got myself ready mentally and physically for the run. It was a beautiful morning and the birds were chirping like crazy. During the whole run I felt so good...it was like I was flying on cloud 9. I was truckin'! The hardcore runners definitely come out in the morning. I saw so many people in running gear and most of them have to be training for the marathon. So I ran around Lake Harriet first, then Lake Calhoun and last Lake of the Isles. There were these two girls that came running quickly up behind me as I started around Lake Calhoun and then they passed me. Well, for some reason something came over me and I kept up with them and even ended up passing them. I decided to go the opposite way than usual around Lake of the Isles and I actually met up with them again at about the half way point. Then, as I reached Lake Calhoun and stopped for a drink and headed on my way soon the same two girls came flying up behind me. They were sprinting and I was like wow...I'm not going to win this one. However, they finished about 50 meters ahead and headed for home. As they turned around, I said "good job girls" and they said the same to me. I thank them for helping me keep up the pace. However, I still kept on going to finish the last lag of the run around Lake Harriet. As I was running up the hill that way, I passed this older man and he said "I'll race you". I looked at him and smiled and started to book it. He definitely kept up good pace, but I beat him to the top! He was probably about 60 years old so he definitely did a good job. I hope I'm able to run like that at his age. Anyway, he asked me if how far of a run I was going for and asked if I was running the marathon. When he heard my answer he said, "keep up the good work". At that moment, I thanked my dad because I saw that as him speaking through that man to tell me that he proud of me. It was definitely a good run!
However, I didn't stop when I finally got home. I actually cleaned the house for several hours for our party. Yeah..it was a long day, but a fun day. Our housewarming party was a blast! I talked to a lot of people about the marathon and about my dad and many were very interested. I never stop spreading the word. Please do the same! Thank you to all who came!
So today I just have been taking it easy and being a couch potato. I haven't done that in a long time and it definitely feels good. I like being lazy from time to time! He he! I hope you all were able to rest today as well. May God bless you!
Much love,
Lacy

Who killed my son??

2008-08-08T14:42:00.000-07:00

If you have 20 free minutes please watch this youtube video. It is about a woman from the UK who video taped her story with her son who suffered from vCJD. It is a 2 part video, but it is very eye-opening and emotional. Just watching her son reminds me so much of my dad and his sufferings. He quickly lost one ability after another until he was bed ridden, unable to speak and unable to swallow. However, my dad suffered for 3 months while this young man appeared to have suffered for 6 plus months. I'm sure his youth played a role in that. Anyway, this video is worth taking a look at so you can see what exactly a CJD patient goes through. It is pretty heart-wrenching.

I'm thinking that I'm going to run 12 miles early tomorrow morning. We are having a house-warming pary at my new place and it might be hard for me to get up early in the morning. Wish me luck that I have a more successful run than last weekend!

Many blessings,
Lacy

www.youtube.com/watch?v=DbGtk4UutXE (PART 1)
www.youtube.com/watch?v=eLSSAh6luYA&NR=1 (Part 2)

I did it!!

2008-08-07T00:50:00.000-07:00

So I woke up early today and prepared things for my teaching this evening. By the time I was done it was 11:00am and I decided to go for a long bike ride. I actually biked around Lake Nakomis, Lake Harriet, Lake Calhoun and Lake of the Isles. Yeah...that was lots of miles, but I'm not too sure how many. Anyway, it was a good ride and I definitely enjoyed myself. By the time I was done my legs were like rubber, but I survived.
So I just wanted to let you all know that God definitely answers our prayers. I have been praying all week that God confirms to me that he wants to use my talents in the education field. He definitely prooved that true to me today. When I was teaching something came over me...it was like it came from with in. I didn't get nervous at all. It was natural. My peers who spoke Spanish and even those who did not, were so impressed. They said I was a natural. Wow! That is just what I needed. Teaching kindergarten Spanish Immersion is what I'm meant to do and I'm so excited!! Thaank you Lord! You are so amazing!

I hope you all are feeling his magnificent love in your lives!

-Lacy

Mad Cow Causes BOTH 'Sporadic' CJD and vCJD

2008-08-06T21:16:00.000-07:00

Thank you for your prayers. My teaching went very well today. I couldn't have asked for better. Please pray that the same goes for tomorrow. That is the lesson I'm most worried about. Anyway, please read this article below. It is very interesting and shocking. It will definitely keep you wanting to know more. I didn't post the entire article, because it is a little long. However, I would have to say that the whole article has a lot of important things to say. If you get a chance, please read until the end at www.rense.com/general47/spor.htm

Mad Cow - Linked To Thousands Of CJD Cases?

"People who develop CJD from eating mad cow contaminated beef have been thought to develop a specific form of the disorder called variant CJD. But new research, released last December, indicates the mad cow pathogen can cause both sporadic CJD and the variant form, vCJD."

By Steve Mitchell United Press International 1-3-4

(UPI via COMTEX) -- The U.S. government's monitoring system for cases of Creutzfeldt-Jakob disease, a fatal human brain illness, could be missing tens of thousands of victims, scientists and consumer advocates have told United Press International.

Creutzfeldt-Jakob disease or CJD can be caused by eating beef contaminated with mad cow disease, but the critics assert without a better tracking system it might be impossible to determine whether any CJD cases are due to mad cow or obtain an accurate picture of the prevalence of the disorder in the United States.

Beginning in the late 1990s, more than 100 people contracted CJD in the United Kingdom and several European countries after eating beef infected with bovine spongiform encephalopathy -- the clinical name for mad cow disease.

Only one case of mad cow has been reported in U.S. cattle -- on Dec. 24 in a cow in Washington state -- and the Centers for Disease Control and Prevention's monitoring system has never detected a case of CJD due to eating contaminated American beef. Nevertheless, critics say, the CDC's system misses many cases of the disease, which currently is untreatable and is always fatal.

Spontaneously-occurring or sporadic CJD is a rare disorder. Only about 300 cases appear nationwide each year, but several studies have suggested the disorder might be more common than thought and as many as tens of thousands of cases might be going unrecognized.

Clusters of CJD have been reported in various areas of the United States -- Pennsylvania in 1993, Florida in 1994, Oregon in 1996, New York in 1999-2000 and Texas in 1996. In addition, several people in New Jersey developed CJD in recent years, including a 56-year-old woman who died on May 31, 2003. Although in some instances, a mad cow link was suspected, all of the cases ultimately were classified as sporadic.

People who develop CJD from eating mad-cow-contaminated beef have been thought to develop a specific form of the disorder called variant CJD. But new research, released last December, indicates the mad cow pathogen can cause both sporadic CJD and the variant form.

"Now people are beginning to realize that because something looks like sporadic CJD they can't necessarily conclude that it's not linked to (mad cow disease)," said Laura Manuelidis, section chief of surgery in the neuropathology department at Yale University, who conducted a 1989 study that found 13 percent of Alzheimer's patients actually had CJD.

Several studies, including the one by Manuelidis, have found autopsies reveal 3-percent-to-13-percent of patients diagnosed with Alzheimer's or dementia actually suffered from CJD. Those numbers might sound low, but there are 4-million Alzheimer's cases and hundreds of thousands of dementia cases in the United States. A small percentage of those cases could add up to 120,000 or more CJD victims going undetected and not included in official statistics.

Experiences in England and Switzerland -- two countries that discovered mad cow disease in their cattle -- have heightened concerns about the possibility some cases of sporadic CJD are due to consuming mad-cow-tainted beef. Both countries have reported increases in sporadic CJD since mad cow was first detected in British herds in 1986.

Switzerland discovered last year its CJD rate was twice that of any other country in the world. Switzerland had been seeing about eight to 11 cases per year from 1997 to 2000. Then the incidence more than doubled, to 19 cases in 2001 and 18 cases in 2002.

The CDC says the annual rate of CJD in the United States is one case per million people, but the above studies suggest the true prevalence of CJD is not known, Manuelidis told UPI.

Please go to the website above to read on....

I must write fast...

2008-08-05T20:23:00.001-07:00

because I'm going crazy!! Please pray for me. I have to teach in front of my peers tomorrow and the book that I based my lesson on still hasn't arrived. I ordered it over 1 week ago. There's a chance that it could come tomorrow, but I don't want to risk it. I need a plan B! I've searched all libraries around here and none have a copy of the book in Spanish. It looks like I'll have to get the version in English and translate it myself. What a pain! Tomorrow is going to be hectic. Wish me luck...I'm going to need it.

With all the craziness going on in my head it was easy not to focus on running. I prayed the whole time that the book will come tomorrow and everything will turn out ok. Because I was so occupied, the 5 miles went by quite quickly and I don't actually remember it that well. Oh..there were a few things that caught my attention now that I think about it. I saw a little dog in a dog carrier that a man was wearing on his back...it was so cute! I had never seen anything like it before. It was like what men and women wear to carry their baby on their back. I also saw a group of 5 kids all dressed up in costumes and it appeared they were practicing for a play. I'm not too sure what it was about, but it looked interesting. Oh...the things you will see in Minneapolis! I'm sure I haven't seen nothin' yet!

Please keep me in your prayers that my teaching turns out great tomorrow. I'll let you know how it goes. Hopefully, I come back bearing good news!

Much love,
Lacy

Once again blessings from afar....

2008-08-04T18:47:00.000-07:00

A couple of days ago I received a letter in the mail and there was no return address on it, but a heck of a lot of stamps. I was thinking that it had to have traveled a long way. Not in a million years did I think I would get correspondence from a different country, but once again God makes the impossible happen. This letter actually crossed oceans and came all the way from Australia! Wowzers...eh? Thank you Peter for your support by reading my blog. Peter is a systems analyst (aka...really smart!) and he is trained to recognize patterns. He went on to write about his neighbor who passed away from CJD. He was a vietnam vet and his widow claimed that during the early stages of the disease when he was more aware he blamed a shipment of chicken supplied by US forces in vietnam. He felt unwell after eating this meal and apart from that, he also suffered at that time from what was assumed to be "malaria". Just a freak incident...right?

However, Peter is also part of an online forum and one correspondent commented that her father was suspected to have CJD and he also was a vietnam vet.
My father was a vietnam vet. However, I'm not too sure that he ever stepped foot on to Vietnam territory because he was in the navy and spent most of his time on a ship in the middle of the ocean working on jet engines. However, the part that Peter mentioned about his neighbor suffering from what they thought to be "malaria" gave me an eary feeling. I wrote a paper on my dad in high school and I clearly remember him telling me how he became horribly sick in vietnam with what was assumed to be "mononuculosis". He said it was such a horrific experience because not only was he sick, but he also had to be in lock down for 2 weeks so not to infect other men. I right away called my grandma to confirm this information and she said it was certainly true. She actually believed it to be more serious than they would tell her.

I agree with Peter when he states in the letter, "Sure, these three incidents don't form any proof whatever,.....but no disproof either." There is not much information out there about CJD so if there is something that we can grab onto, it is worth it in my eyes to investigate more. If any of my readers have had a loved one pass away from CJD or is currently suffering from the disease and there is a connection with the Vietnam war, please let me know. Also if any of you have comments or whatever, please don't hesitate to respond.

Much love and blessings to all,
Lacy

I couldn't have asked for a better day....

2008-08-03T16:51:00.000-07:00

It was hard to get up this morning with the rainy, dark weather and all. I love sleeping during storms, especially when the breeze comes through the window. However, I woke up bright and early at 7:30am to meet my good friend Jan Heyerdahl, who was also me 8th grade English teacher, and go to church with her.
Just to fill you in a little. When I was a volunteer in Guatemala last year I was translating a letter to a little girl from her god mother. The letter absolutely brought me to tears and then when I saw the signature I almost went into shock. Was this the same woman who was my teacher? Indeed, it was and what a God moment. Jan contacted me after reading that my dad had passed away and we met up. She wanted to send some things with me for her godchild when I returned back to Guatemala for a quick visit to close things up there. Anyway, we had an amazing reconnection and haven't lost touch since. She is truly a woman of great faith. She is definitely a gift from God for me to see his light during this dark time of grief. Anyway, she actually decided to go down to Guatemala to visit her godchild for the first time. It was the such a moving experience for her.
So we reconnected today not only to go to church together, but also so she could show me her photos and give me a letter that she received from one of my friends in Guatemala. How great it was to go through her photos and see the people that I love so much. It brought back so many good memories that just calmed my heart. It was a year ago today that I returned from Guatemala for a short visit and God showed me that Guatemala is not that far away. Another God moment was when I was about to say goodbye to Jan. I had mentioned to her about my family reunion today and how I wanted to bring the sweet corn, but my step-mom decided not to come so I had no way of getting the big pot, cooking stove and kerosene that my dad always used. I didn't know what to do and I was debating even bring the corn. However, before I left she said that she had a little something for me. She brought me outside and gave me a burlap sack ahnd inside were a dozen ears of corn! Amazing! Who has sweet corn just lying around? Well...she just happened to because she ate it with her family this weekend. I was just brought to tears! That was dad telling me that he would make it possible to make the corn.
My step-dad ended up having all the supplies I was missing so there was another blessing. So I just stopped at a farmers stand on my way down to the picnic and picked up 2 dozen more ears of corn.
It was so good to see my family and they were all so very thankful that I took over the corn for my dad. I got lets of help removing the corn husks and setting everything up. It was great! Before we sat down to eat, My great uncle Mel made sure to call everybody's attention for a moment of silence to remember the man who always provided the corn for us. That was such a moving moment. As the tears rolled down my cheek, shivers ran up my spine. The corn actually turned out very well...dad would've been so proud. It didn't stop there, when people started to pack up their things to leave my uncle Ken called for everybody's attention once again. With tears in his eyes, he told our family that I am running a marathon in honor of my dad and to raise funds/awareness for CJD. He gave them the info about my blog and also asked for their support either spiritually or monetarily. That was such an uplifting moment for me, that truly touched my heart. Thank you so much Uncle Ken for your love and thoughtfullness.
It was an emotional day, but God answered our prayers and blessed me in so many ways. All the way home I rocked out to my dad's music and praised God. He is so great! I pray that you all are also feeling the light of his love in your lives as well.
Many blessings,
Lacy

Oofta....I'm pooped!

2008-08-01T20:51:00.000-07:00

Well..I didn't head out for my run until 2pm and that probably wasn't the best idea. It was a hot one, but I lucked out because there was a little breeze. I felt very stylin' in my new shorts and shoes. However, that ended quickly when I ran by this really cute guy and as soon as we made eye contact I almost tripped and fell. How embarassing! Just my luck! It was definitely a hard run today and I didn't feel on top of my game, but I did run 12 miles! My hips weren't bugging me, but my calfs (is that spelled right?) felt really tight and heavy. My new shoes are great, but I probably shouldn't have done that long of a run to break them in. I think my right foot is bigger than my left, because my toes felt kind of scrunched. Wierd! Also, I just couldn't stop thinking about how much further I had to go. I started off listening to country music, but that didn't motivate me at all. I needed something that I could sing to so that my mind wouldn't be on running. So I put on some shakira and that definitely helped! It was a beautiful day and I ran the same route that I rollerbladed earlier this week. However, it felt a lot longer today! However, I did it and I survived!
I want to ask for your prayers not only for me, but for my family as well. It was this weekend one year ago that I came home from Guatemala and that was the same day my dad went to the hospital thinking he had a stroke. I'm so glad that he is no longer suffering, but now start the days of reliving. I'm doing the same thing this weekend as I did the weekend I came home from Guatemala, which is kind of strange. I'm going to my hometown celebration and on Sunday I'm going to the "Hladky" family reunion. My dad was there with us at the last one and he always brings the sweet corn. I'm thinking I should take over that job this year. I want to keep his memory alive. We are sure going to miss him a lot more this weekend. Please keep us in your thoughts and prayers.
Much love,
Lacy

Blessings from afar...

2008-07-31T19:51:00.000-07:00

The rainy weather didn't clear up until the afternoon and I knew I couldn't wait that long, because once again I had to head to the library to work on my 10 day unit plan. I was going to just take another day off, but I decided to do an hour of yoga instead to release the tension. I love yoga! I actually sweat too! Can you believe that? Anyway, it really helps you to stretch parts that you never thought imaginable. I've never been good at the whole stretching thing. I just head out for my run and as soon as I get back I hop into the shower. That is probably why my hips bug me so much.
I met my friend Michelle, who is running the marathon with me, at Run n' Fun in St. Paul. She had a 25% off coupon that she received after running Grandma's marathon, which by the way was her 11th marathon! Wowzers! All this work for one...I can't imagine doing 11. Goodness! Anyway, she helped me a lot to find new running shoes, some cool running shorts and running socks. She said to definitely wear good socks on the long runs or you will for sure get blisters. Blisters are no fun...so I purchased the spendy socks. However, I think it all came out to a good deal with the whole 25% off every item. Thank you so much Michelle for thinking of me! I'm excited to run 12 miles tomorrow in my new shoes and shorts. I'll definitely be in style!
When I got home this evening I saw that I had a letter waiting for me on the table. I didn't recognize the name nor California address, but as soon as I started reading I felt such a light from above. Abby Webb, who contacted me before about the spelling of Creutzfeldt-Jakob Disease for my shirt, wrote me such a moving letter. She also lost her father to CJD and by the experience she recounted to me it appears that our fathers endured the CJD with the same humility. Abby, thank you so much for your thoughtful letter. It really touched my heart. Once again, someone from far away who I have never met is giving me so much encouragement. What a blessing! I actually found your sight prior and I have to say that you are amazing! Your dad must be proud! I would like to go down that way and join you for your bike rides. I wish you the best of luck with your marathon. It is a feat, but with God and our dad's on our side we can do anything! Thank you!
After settling down and getting ready for bed, I decided to hop on the computer to update my blog. I obviously had to check my email as well. It warmed my heart once again to so that I had an email titled "lost my mom to CJD". The support that I've had with this whole thing from people who I don't even know has been so amazing to me. Nikki contacted me because she saw my posting on the CJD Foundation Website. She has been doing some awesome things for CJD and she is also raising support/awareness by participating in a traithalon. Way to go girl! She mentioned that CJD conference, which is held in Washington DC, is so insightful and beneficial. She said that there was a representative there from the CDC and FDA, but nobody from the USDA. I agree with you Nikki...imagine that! I hope to make it to the conference some day soon. That's what's difficult about being a teacher...my days off are already determined for me. Hopefully, I can make something work out. It would be so great to meet you, Abby and others that have lived through the same horrible experiece of losing someone so dear to CJD.
Anyway, I just blabbled a lot but I couldn't contain my happiness. God is so amazing! Thank you to all of you who continue to support me along the way. No matter how near or how far, I feel your love pushing me along.
-Lacy

Please pray for me!

2008-07-31T07:07:00.001-07:00

I decided to rollerblade yesterday since my hips were still hurting me. I didn't fall so that was a good thing! I always get nervous about the curbs where the sidewalk ends. They need to make that smoother! Anyway, it was a great day for rollerblading and I really enjoyed myself. I actually extended my usual path and went around Lake of the Isles as well. So if my guesstimations are right then I rollerbladed about 12 miles yesterday. I'm so blessed to live by such great trails!

I was thinking about going for a long bike ride today, but it doesn't look so promising outside. Hopefully, the sky will clear up sooner than later so that I can head out. I don't think I'm going to do a short run before my long 12 mile run. My hips have really been bugging me and I haven't been feeling the best. This may be because I've been spending lots of time at the library in front of a computer working on my grad homework. I often leave the library feeling like a zombie. Anyway, I ask for your prayers that God will renew me and I will feel like 100 bucks for my 12 mile run. I actually plan to do the 12 miles on Friday early in the morning, because I have a pretty busy weekend coming up so I don't know if I'll be able to fit it in. I need your prayers!

Much love,
Lacy

Is the FDA really doing their job?

2008-07-29T20:55:00.000-07:00

FDA Food Inspections
Are Seen as Inadequate
JANE ZHANG / Wall Street Journal 17jul2007

WASHINGTON — Congressional investigators are expected to tell a House subcommittee today that the Food and Drug Administration's ability to ensure the safety of the U.S. food supply is "minimal" and agency plans to overhaul its inspection regime could make a bad situation worse.

FDA officials, under fire for the recent string of high-profile food scares involving both domestic and imported foods, have been asked to appear before a House Energy and Commerce investigations subcommittee hearing to discuss the agency's food inspections.

Committee staff reviewed the system extensively and found that a shrinking inspection staff examines less than 1% of all imported food. A typical inspector in the FDA's San Francisco office examines nearly 1,000 food entries a day — roughly one every 30 seconds, the committee report found. The agency, it says, allows importers to take possession of their high-risk goods and arrange for testing by a private laboratory. Before melamine-contaminated pet food killed and sickened thousands of pets, the FDA had never inspected those ingredients from China.

The FDA is trying to reorganize its field operations, but the report says some of its measure may backfire. Only a small percentage of its senior scientists are willing to be transferred if the agency closes seven of 13 laboratories. And in boxes of documents delivered to congressional investigators to explain the reasoning behind the closures, the agency didn't appear to have conducted any cost analysis.

The committee investigators also raise questions about the adequacy of the FDA's mostly voluntary approach to domestic and imported food. Because of lack of authority, FDA inspectors had been refused by some companies to access their records and test results. With the exceptions of several food categories, "FDA has no rules governing testing protocols, record retention...manufacturing, quality assurance and control, or the right to examine any records that a food-processing firm chooses to keep voluntarily," the report said.

The report was based on reviews of documents, interviews with industry experts and current and former FDA employees. Investigators also visited FDA laboratories and field offices.

The report, part of today's hearing, comes as Democrats are critical about how the White House has handled food safety. Funding for the FDA's food program has been stagnant, and the agency's effort to fix problems has been limited by funding shortfalls, bureaucratic delays and lack of political will.

FDA spokeswoman Julie Zawisza said the agency hasn't seen the report, but its senior officials, including Commissioner Andrew C. von Eschenbach, will testify. "We look forward to addressing the issues the committee will raise."

Mindfully.org note:

This is a totally inadequate use of the word inadequate. Even if the FDA were working as well as anyone should expect, it is so well-connected to industry that nothing terribly meaningful will come from it. Regulations are written by the regulated industries and passed off as protective of the public.

To believe in the FDA is to believe in a fairy tale.

To correct the situation, literally every regulation would need to be rewritten or tossed. And the FDA would require the authority to enforce regulations with stiff fines and jail sentences. Short of those things, the FDA isn't worth much of our thought.

source: p.A9 17jul2007 http://www.mindfully.org/Food/2007/FDA-Inspections-Inadequate17jul07.htm

Check out this other informative article about the FDA: http://www.msnbc.msn.com/id/17349427/

Why so young? (This is a long one...)

2008-07-28T17:19:00.000-07:00

The posting below was found on the CJD Voice Guestbook.

Wednesday 11/07/2007 3:02:25pm
Name: Lindsay Smith
E-Mail: lsmith12981@yahoo.com
Referred By: Search Engine
Location: Birmingham, AL
Comments: My best friend who is 26 years old was diagnosed with CJD in June. Her name is Megan and she lives in Atlanta, and she has been battling the symptoms since March, and we are told that she is the second youngest person in the US to ever have CJD...this is such a bizarre mystery and truly devastating!!!! Please keep her and her family in your prayers!

Doesn't variant CJD, the form linked to Mad Cow's Disease, have a history of striking younger aged people?

vCJD Differs from Classic CJD
This variant form of CJD should not be confused with the classic form of CJD that is endemic throughout the world, including the United States. There are several important differences between these two forms of the disease. The median age at death of patients with classic CJD in the United States, for example, is 68 years, and very few cases occur in persons under 30 years of age. In contrast, the median age at death of patients with vCJD in the United Kingdom is 28 years.

The incubation period for vCJD is unknown because it is a new disease. However, it is likely that ultimately this incubation period will be measured in terms of many years or decades. In other words, whenever a person develops vCJD from consuming a BSE-contaminated product, he or she likely would have consumed that product many years or a decade or more earlier.

The BSE epidemic in the United Kingdom reached its peak incidence in January 1993 at almost 1,000 new cases per week. The outbreak may have resulted from the feeding of scrapie-containing sheep meat-and-bone meal to cattle. There is strong evidence and general agreement that the outbreak was amplified by feeding rendered bovine meat-and-bone meal to young calves.

Background
Since variant CJD was first reported in 1996, a total of 208 patients with this disease from 11 countries have been identified. As of June 2008, variant CJD cases have been reported from the following countries: 167 from the United Kingdom, 23 from France, 4 from Ireland, 3 from the United States, 3 from Spain, 2 in the Netherlands, 2 in Portugal, and one each from Canada, Italy, Japan, and Saudi Arabia. Two of the three U.S. cases, two of the four cases from Ireland and the single cases from Canada and Japan were likely exposed to the BSE agent while residing in the United Kingdom. One of the 23 French cases may also have been infected in the United Kingdom.

There has never been a case of vCJD that did not have a history of exposure within a country where this cattle disease, BSE, was occurring.

It is believed that the persons who have developed vCJD became infected through their consumption of cattle products contaminated with the agent of BSE or in three cases, each reported from the United Kingdom, through receipt of blood from an asymptomatic, infected donor. There is no known treatment of vCJD and it is invariably fatal.

U.S. Surveillance for variant CJD
The possibility that BSE can spread to humans has focused increased attention on the desirability of enhancing national surveillance for Creutzfeldt-Jakob disease (CJD) in the United States in order to detect variant CJD. Improving methods to detect classic CJD, such as increasing the number of autopsies on patients with suspected prion disease, enhances the ability to identify cases of variant CJD.

The Centers for Disease Control and Prevention (CDC) monitors the trends and current incidence of classic CJD in the United States through several surveillance mechanisms. The oldest and most systematic method includes analyzing death certificate information from U.S. multiple cause-of-death data, compiled by the National Center for Health Statistics, CDC. During 1979-2003 the average annual age adjusted death rates of classic CJD have remained relatively stable. Moreover, deaths from variant CJD in persons aged <30 years in the United States remain extremely rare (<5 cases per 1 billion per year). In contrast, in the United Kingdom, over half of the patients who died with vCJD were in this young age group.

In addition, CDC collects, reviews and when indicated, actively investigates reports by health care personnel or institutions of possible variant CJD cases. Finally and very importantly, in 1996-97, CDC established, in collaboration with the American Association of Neuropathologists, the National Prion Disease Pathology Surveillance Center at Case Western Reserve University, which performs special diagnostic tests for prion diseases, including post-mortem tests that can detect vCJD.

vCJD Cases Reported in the US
Three cases of vCJD have been reported from the United States. By convention, variant CJD cases are ascribed to the country of initial symptom onset, regardless of where the exposure occurred. There is strong evidence that suggests that two of the three cases were exposed to the BSE agent in the United Kingdom and that the third was exposed while living in Saudi Arabia.

The first patient was born in the United Kingdom in the late 1970's and lived there until a move to Florida in 1992. The patient had onset of symptoms in November 2001 and died in June of 2004. The patient never donated or received blood, plasma, or organs, never received human growth hormone, nor did the patient ever have major surgery other than having wisdom teeth extracted in 2001. Additionally, there was no family history of CJD.

The second patient resided in Texas during 2001-2005. Symptoms began in early 2005 while the patient was in Texas. He then returned to the United Kingdom, where his illness progressed, and a diagnosis of variant CJD was made. The diagnosis was confirmed neuropathologically at the time of the patient's death. While living in the United States, the patient had no history of hospitalization, of having invasive medical procedures, or of donation or receipt of blood and blood products. The patient almost certainly acquired the disease in the United Kingdom. He was born in the United Kingdom and lived there throughout the defined period of risk (1980-1996) for human exposure to the agent of bovine spongiform encephalopathy (BSE, commonly known as "mad cow" disease). His stay in the United States was too brief relative to what is known about the incubation period for variant CJD.

The third patient was born and raised in Saudi Arabia and has lived in the United States since late 2005. The patient occasionally stayed in the United States for up to 3 months at a time since 2001 and there was a shorter visit in 1989. The patient's onset of symptoms occurred in Spring 2006. In late November 2006, the Clinical Prion Research Team at the University of California San Francisco Memory and Aging Center confirmed the vCJD clinical diagnosis by pathologic study of adenoid and brain biopsy tissues. The patient has no history of receipt of blood, a past neurosurgical procedure, or residing in or visiting countries of Europe. Based on the patient's history, the occurrence of a previously reported Saudi case of vCJD attributed to likely consumption of BSE-contaminated cattle products in Saudi Arabia, and the expected greater than 7 year incubation period for food-related vCJD, this U.S. case-patient was most likely infected from contaminated cattle products consumed as a child when living in Saudi Arabia (1). The patient has no history of donating blood and the public health investigation has identified no known risk of transmission to U.S. residents from this patient.

Prevention Measures against BSE Spread
To prevent BSE from entering the United States, severe restrictions were placed on the importation of live ruminants, such as cattle, sheep, and goats, and certain ruminant products from countries where BSE was known to exist. These restrictions were later extended to include importation of ruminants and certain ruminant products from all European countries.

Because the use of ruminant tissue in ruminant feed was probably a necessary factor responsible for the BSE outbreak in the United Kingdom and because of the current evidence for possible transmission of BSE to humans, the U.S. Food and Drug Administration instituted a ruminant feed ban in June 1997 that became fully effective as of October 1997.

In late 2001, the Harvard Center for Risk Assessment study of various scenarios involving BSE in the United States concluded that the FDA ruminant feed rule provides a major defense against this disease.

BSE/TSE Action Plan of the Department of Health and Human Services (DHHS)
On August 23, 2001, the Department of Health and Human Services (HHS) issued a department-wide action plan outlining steps to improve scientific understanding of BSE and other transmissible spongiform encephalopathies (TSEs). The action plan has four major components:

Surveillance for human disease is primarily the responsibility of CDC.

Protection is primarily the responsibility of the Food and Drug Administration (FDA).

Research is primarily the responsibility of the National Institutes of Health (NIH).

Oversight is primarily the responsibility of the Office of the Secretary of DHHS.

Source: http://www.cdc.gov/ncidod/dvrd/vcjd/factsheet_nvcjd.htm

I would like to expand on some of the sections above that are bolded. In response to the measures that the US takes for surveillance of CJD through death certificate information, I would have to say I'm doubtful of their accurate findings. My dad's death certificate was printed way before his autopsy results were even given to us. The death certificate doesn't mention anything about which of the 3 forms it was; all that it says is cause of death "Creutzfeldt-Jakob Disease". Also, my step-mom sent me the report from the National Prion Disease Pathology Surveillance Center and I just received it today. I was under the impression that this report was my dad's autopsy so I was thinking it would be fairly detailed in length. However, all that I received is one sheet of paper. It has a big stamp on it that says "Mailed 3/21", but for some reason our family didn't receive it until 4 months later. Even with the serious of this disease, the surveillance center is sure taking their time to perform autopsies. Also, using a bunch of technical terms it basically says that "the results of the tests preformed confim the diagnosis of prion disease with the charactersics of sporadic Creutzfeldt-Jakob disease". It also goes on to say "The PrP gene sequencing rules out the presence of a pathogenic mutation so the prion disease in this case is not familial". However, nothing is mentioned about any test done to rule out vCJD. Also, the last part of the letter basically uses lots of medical mumbo-jumbo to cover their backs and says, "This method does not consitute a definitive diagnostic test of a precise test for prion associated diseases. Possibe sources of diagnositc error include sample mix-up and genotyping errors...." So basically what I get from all of this is that even after an autopsy, diagnosis findings are not 100% positive. I think all of this has a lot to say about the quality of the CDC's surveillance measures for CJD. Also, the FDA is supposed to be protecting us but I'd have to say that I'm doubtful of the quality of their work as well. Like I said in a prior post, there have been drastic cuts in the amount of Food Inspectors so there is more that goes undetected as more food comes into the US and more facilities arise. Obviously two main areas, surveillance and protection, of the BSE/TSE Action Plan of the Department of Health and Human Services are not measuring up. This puts us all at risk! I'm going to contact "Lindsay Smith" to see if there has been any follow up with her best friend and her CJD diagnosis. I'll let all of you know what I find out. Please keep on spreading the word. I hope this information above helps you to see that there is reason for us to need to know more.

6th week of training...FINISHED!!

2008-07-27T14:01:00.000-07:00

I didn't get a chance to blog yesterday because I was once again running all over the place. I met my friends from church early in the morning and we carpooled down to the Mayo clinic in Rochester where a dear friend of ours is being treated for cancer. He is such an amazing man for God and it tears at my heart to see him in this position. Anxiety tends to take over me whenever I enter into hospitals now and I become very short of breath. However, that all went away when I saw Donnie and was able to sit at his side and hold his hand. It did kind of feel like dejavu becauseI did the same with my dad everyday when he was in the hospital, but having his hand in mine calmed my heart and that whole time I felt my dad so close. Donnie was having a good day and he even took a little walk in the morning, which is a huge step for him. He also cracked some jokes here and there and showed us his beautiful smile. His pain and suffering has definitely taken a toll on his spirits, but he is a man of much faith and that has really carried him through. He is definitely a light for God's mercy. However, it's easy for me see God working through him being that I'm on the outside, but I'm sure it's beyond scary and painful to be him and enduring so much suffering. It isn't fair to see such a good man going through this, but God makes miracles happen and I trust that He has a great plan for Donnie. The love that they share will prevail. I ask all of you to pray along with me that Donnie continues to seek the Lord whenever it becomes too much for him to handle. I pray that he will feel and see God's love so near and ride on His wings through all of this. Also, pray for his wife Linda who is walking through this pain with him and stands by his side everyday. Pray that she feels God's love giving her strength and hope.

I woke up early today and met my friend Michelle at her place to do a 10 mile run together. Michelle has done several marathons and she definitely knows what she is doing. It will definitely be great to have her at my side helping to keep me going. I feel so blessed! Thanks Michelle! Anyway, our other friend Megan who is an awesome runner decided that she wanted to come with us. That made me nervous and I right away told her that I most likely won't be able to keep up with her the whole time. He he! The three of us, along with Michelle's pitbull dog, headed out into the hot and sticky weather and started out strong. It was a beautiful run and when I started to feel exhausted I would just praise God for blessing me with health to do this and called on my dad to keep on pushing me through. Their love never fails me because we kept up our pace and finished 10 miles in less than 1 1/2 hours. I was very impressed! Thank you Michelle and Megan for running with me today!

I do want to ask that you pray for me as well, because eventhough I finished the 10 miles I am now feeling much pain in my hips. Please pray that God will give me wisdom on how to remedy my pain. It will be great to rest tomorrow and I think that I'm going to purchase some new running shoes. Thank you so much for your continued support and prayers. You all definitely help me to keep on going!

Much love,
Lacy

Cross-training is such a relief!!

2008-07-25T20:22:00.000-07:00

I was a bit worried that I wasn't going to be able to get in my long bike ride today, but the rain went away just in time. It was quite muggy out and I sure was sweating up a storm, but it felt great! I love biking! I truly feel like I'm flying and that I could go for miles and miles and miles! It is like I get lost in space, especially when I'm rocking out to Spanish music! He he!! I'm glad that I have decided to incorporate cross-training into my schedule. It really does add for more relief to my knees and hips from all the impact. I actually feel more energized for my long runs on Sundays when I have done cross-train as a previous work out.

I want to say you to my sister, my step-mom, Lisa Spencer and Abby Webb for their comments regarding the t-shirt. Abby, it is so great to hear from you and thank you for following my blog. I truly appreciate you letting me know about the hyphen. I can't believe I've been spelling it wrong this whole time (Creutz-feldt Jakob disease =Creutzfeldt-Jakob Disease). I think I got that from the way I was pronouncing it. Strange! Anyway, thank you and I have already sent a message to Holly asking her to change it on both sides of the t-shirt and I even corrected the spelling on my blog as well. Thank you also to my step-mom and Lisa Spencer who mentioned that "father" should be replaced with "loved one" so that others who are interested can purchase a shirt and continue to spread the word. That is a great idea! I was actually thinking of doing the same before, but I was holding off to do so until I host a 5k walk/run for CJD either next year or the following year. Better now than later...right? I already sent an email off to Holly to see if she would be willing to make the change and work with me to get lots of t-shirts printed for people to purchase. I don't know if many of you are runners, but maybe we could even get it to say "I walk for CJD". What do you think? I'd appreciate your comments and ideas.

Also, I checked the benefit account balance today and it definitely made my day to see that a generous donation was given. Thank you so much to that gracious person for standing behind me to help fight this horrible disease. Your thoughtfulness is so very much appreciated!

Much love,
Lacy

Please help be a voice for CJD!!

2008-07-24T20:48:00.000-07:00

Today was a rest day so I made sure to make my way to the library early to work on homework. Right when I was really starting to get things rolling, I had to stop and make my way to night class. We had a speaker tonight and her topic was agriculture. She is an amazing woman and definitely has some great teaching ideas. I was intrigued during the whole presentation.

She now works for the University of Minnesota, but prior she was an elementary teacher for numerous years. She definitely has experience! She presented lots of pedagogy for teaching agriculture and she focused on this area of study because she grew up on a dairy farm, she currently owns a farm with her husband and her passion is agriculture. Let's just say she knows her stuff about farming and more!

During her presentation she shared some pretty funny and interesting information about cows. She even brought in a true cow pie. That was great! Anyway, from there she went into how manure is a great resource for fertilizer and even fuel. She mentioned that Agriculture means survival and for that reason, we are lucky to be Americans because of our rich top soil. She showed us a book called "Hungry Planet" that shows what amounts for 1 week worth of food in each country and the US definitely outmeasured them all. Not only that, I guess we live in one of the safest states in the country when it comes to food production and distribution. She confirmed that it was our MN food investigators who concluded that the recent salmonila scare in tomatoes actually was coming from the peppers. The comment that hit my heart was when she said, "You see we are lucky just to be in America".

I definitely feel blessed to be an American, but I can testify of how that freedom does not come cheap. Being that she is a very intelligent woman about agriculture and she has spent much of her life on a farm, I felt this tug at my heart to ask her if she knew anything about CJD. I decided to be bold and make a move. When the class went to break, I approached the presenter and asked her if she has ever heard of "Creutzfeldt-Jakob Disease" and she said, "no, what is that?". I don't blame her or think that she is ignorant. I didn't even know what CJD was until we were given the diagnosis, heck...the doctors couldn't even tell us much about it! I confirmed to her that it is otherwise known as the human form of mads cows disease and she said, "Oh yeah...I know that". I told her that my dad recently passed away from the disease and she was shocked to hear the news. I questioned her comments about the US being an enforcer of best practices when it comes to food and I relayed to her some of the information I have found through my research. She agreed with me about our failing "good" practices because of our lack of food inspectors. I told her several accounts of cows being fed animal parts, people mysteriously getting sick after working with butchering meat, and the fact that there has been mad cows disease confirmed in the US but supposedly there are no cases of it being spread to humans (remember over 98% are sporadic). I think she was a little caught off guard by my questions and comments, but I'm pretty sure it got her thinking.

When class reconviened she actually mentioned what was brought up to her during the break and wanted to clarify her previous comment. She said, "Yes, we are a lucky to be in America just for the reason that we have a lot of freedom to voice our concerns about issues and take initiative for change, but we are not perfect." That is true! There is definitely much not known to us that is being shoved under the carpet. It is our right to know more! Even an agriculture experts doesn't have a firm grasp on CJD and I'm quite positive that she is not alone. Her last comment before moving on to a new tangent was this, "We are one tiny step away from a huge food endemic, even by one toxin getting in our milk supply and instantly affecting millions of people." Well, can't the same be said for CJD in meat? If so, then the time bomb is quick to explode because it is already here. Please help me be a voice for CJD!!! Don't stop spreading the word!

Thanks,
Lacy

Ps. All the formentioned is not verbatim from the presentation. Orientation of words and comments were resummarized from what I recall hearing. I did tell the speaker that I would probably mention our conversation on my blog. She even asked for my blog address and I gave her the information. I hope she visits, makes comments and helps to raise awareness for CJD.

PPS. Please don't forget to tell me your comments and ideas about the t-shirt design below. I need to submit the final outline for the t-shirt by tomorrow. Thanks!

5 miles...That's a piece of cake!!

2008-07-23T12:18:00.000-07:00

Today I got my run in early, because I was determined to get to my university to do some homework. I really need to get going on everything or else I'm going to be very stressed out. That would be no fun! Eventhough I went fairly early, it was still a hot run. Thank goodness for the little breeze and the drinking fountains around Lake Harriet. My ankle didn't bother me at all and I was actually thinking that running 5 miles or even 6 miles is not that big of deal any more. It gets easier with each and every day. However, this Sunday I have to do a long run of 10 miles and I'm a bit nervous about that. The most I've done this summer is 9 miles so 1 more mile shouldn't be that difficult...right? Please pray that it is a nice day for a run. Rain or shine I will have to go!

I received an email back from Holly today who is helping me with making my t-shirt. She is incredible! Here is the idea that she put together and I want to know what you all think about it. Do you think that it will catch the eyes of people when I am running? I would truly appreciate your input before I tell her to go ahead with printing the t-shirt. Thanks for everything!

Much love,
Lacy

Sterilisation 'may not kill CJD'

2008-07-22T21:55:00.000-07:00

Thank you for your prayers, because today ended up being a bright day! I wanted to remember my Grandpa on his 1yr passing so I decided to pick up my grandma and take her to his gravesite at Fort Snelling Cemetary. We had great conversations about my grandpa and my dad during the drive. This may seem wierd, but I don't think that I have grieved for my grandpa. I was volunteering in Guatemala when it all happened and then when I came home, I was consumed by my dad's situation. It felt good to keep the memory of my grandpa alive and his love so close to my heart. We said some prayers by my grandpa's gravesite and visited with him for a little bit. It was so peaceful out there and when we drove away, I felt such comfort in my heart. It was a good visit! I know my grandpa is rejoicing in heaven and I wouldn't want anything else for him right now. He is living in the utmost happiness!

Yes today was a good day for the most part, until I had to say goodbye to Buddy. I prayed about the situation so much and tried everything I could to figure out ways to keep him, but it just didn't work out. I don't have the best living situation rigt now for a dog and I'm worried about the responsibility being that this upcoming school year will probably be hectic as a new Spanish Immersion teacher. I trust that God will take care of him for me no matter where he goes so I had to let him go. I will continue to pray for Buddy and that he be loved by his owners. Please do the same.

Today was a rest day for me so I did some research about CJD. Please read this article about how CJD is basically indestructible. I guess you can't even burn it or sterilize it. That is scary! How do we protect ourselves and one another?

Sterilisation 'may not kill CJD'
A survey has found that surgical instruments still have the potential to harbour CJD even after sterilisation.
Edinburgh University found every instrument they tested was contaminated with enough protein residue to pose a potential infection risk.

The researchers tested instruments taken at random from five NHS hospital trust sterile service departments.

The study, financed by the Department of Health, appears in the Journal of Hospital Infection.

CJD is the commonest form of human prion disease
There are different types, including sporadic CJD and variant CJD, which is linked to BSE
All forms of CJD are progressive neurological disorders which are fatal and for which there is no cure
In the UK, there are between 50 and 65 deaths each year from sporadic CJD
So far, there have been more than 150 deaths from variant CJD
A study of appendix and tonsil samples suggests there could be around 12,000 people in Britain who carry vCJD
The pre-symptomatic gestation period for CJD can be from a few years to decades

CJD, a degenerative and fatal brain disease, is thought to be caused by mutated proteins called prions.

These twisted proteins are known to be able to cling to the surface of surgical instruments, and are remarkably difficult to remove by standard decontamination processes, which involve the use of detergents and super-heating.

There have been instances of patients contracting CJD from contaminated instruments during surgery.

The Edinburgh team found an average level of protein contamination of 0.2 microgrammes per square millimetre of instrument.

Unknown risk

If prions were found on so-called sterile instruments in the levels recorded in the study, that would be billions of times the dose needed to cause infection in humans.

The highest doses were found on instruments used to remove tonsils - one of the tissues known to harbour prions.

Lead researcher Professor Bob Baxter, from the University's chemistry department, said "You can never get something 100% clean, but we were surprised at how much protein there was."

Professor Baxter said measures to quarantine surgical instruments were taken if a patient was known to be at high risk of carrying CJD.

But he said that as a result of the use of contaminated blood supplies, an unknown number of people could be harbouring the disease.

"There are certainly people out there who are at risk, but we don't necessarily know who they are," he said.

The Edinburgh team has developed a more effective way to sterilise instruments, using a technique called gas plasma sterilisation.

This uses radio waves to excite the molecules of harmless gases, creating charged atoms called ions and radicals which effectively scour the surface of the instruments, breaking down traces of biological tissue and converting them to non-toxic gases.

Gas plasma sterilisation can remove prions to levels a thousand times lower than those achieved by existing methods.

Professor Baxter has recommended the widespread introduction of gas plasma cleaning to the Department of Health.

A Department of Health spokesperson said the study would be considered by an expert group.

"Although we consider the gas plasma decontamination technique interesting, it is not currently in a form that can be used in routine decontamination of surgical instruments."

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/5281100.stm

Published: 2006/08/24 11:54:32 GMT

What should I do????

2008-07-21T20:32:00.000-07:00

Well..today was an interesting day to say the least. I had to be in Minnetonka for a meeting at 10am and after, I decided to stop and visit my sweet Grandma Hladky. I was glad to see her and chat a bit, but that was cut short because she had an appointment with the Contour Mattress salesman for a new bed and that seriously took about 2 hours! My grandma wasn't too thrilled with all the bells and whistles of the bed so I don't think she is going to spend the money on it. However, I did tell her that if she isn't sleeping well that she should definitely buy a newer mattress. Yeppers!

Then, I headed home and I was planning to take the rest of the afternoon to complete some homework. Well...that didn't so much happen. Our maintenance guy, Dale, showed me this dog that he has been taking care of for 6 months. The situation is that he did a favor for this friend of his and watched his dog while he went to basic training. Well...he came back and then got stationed in Germany for 3 years and Dale decided that he couldn't take care of the dog for 3 more years, he already has several dogs at his place up north. So basically he brought the dog down here, because he is going to drop the dog off at his friend's mother's house. I guess the mother doesn't really want the dog, but sees no other option at this point. Well...as soon as I saw the dog I fell in love. His name is Buddy and he is a 2 year-old golden retriever. He came running into my arms, wagging his tail and gave me so much love! He is such a precious and good dog.

My heart went out for him and it tore at me to think that he would go to live at a place where the person doesn't want him. The first dog that I had was a golden retriever and she was the best dog ever. I miss you Sonnie! She passed away about 2 years ago and instantly when I looked into Buddy's eyes I thought of Sonnie and my step-dad, Steve. I called Steve and told him the situation and he was kind of undecided about the whole thing. Then I called my mom and she said that she was ok with it, but the decision was up to Steve. Dale was going to bring the dog to the mother's house in 1 hour and Steve could only say that he would give me his decision tomorrow. I asked Dale if he could hold off and bring the dog tomorrow and he agreed. I thought Steve can't make a decision without seeing this dog's cute face and loving personality. So I put the dog in my car and drove up to my parent's house. Buddy did so good in the car, no noises or nothing. I had my Spanish music blasting and he didn't seem to care at all.

Well...Steve came home and visited with the dog for a bit. Our other dog, Milo, wasn't too excited about his new friend. He was actually quite jealous and there were a few growls here and there. In the end, Steve decided that he didn't want to take care of another dog. I was sad for Buddy as I was driving home and praying that God has a loving home planned for him. I decided to enjoy Buddy as long as he was here and play with him as much as I could. I actually took him running with me and it went pretty well. My ankle didn't even hurt that much. Yippee!! Even when we passed by other dogs that yipped and barked, Buddy didn't make a sound and he just kept running. When we were stopped at an intersection, he would approach other people waiting and they would pet him. They couldn't resist the cute face. I actually noticed that more people made eye contact with me when I was running with a dog. I must look a lot cuter when I have a dog at my side. He he! I actually felt good with Buddy as my running partner. However, he did slow down quite a bit at the 3 mile mark so I decided that I better turn back for home. I think this was his first time going for a run and 6 miles was quite a bit. I had to basically pull him for the last mile. That's ok though...I forgive him! He is just so cute! So yeah...I only was able to do 6 miles today and not 9 like I had planned, but I don't blame Buddy.

Actually, during my run I prayed a lot for a good home for him and it crossed my mind that I would actually like to keep him. However, I don't know if that is such a good idea. A dog is a lot of responsibility and I don't have the most ideal living situation for a dog. Dale even mentioned to me if I would want to have the dog and I told him that I was actually thinking that same thought. I even got a invite from my grandma in the mail today and it had 5 golden retriever puppies on it. What does all of this mean?? Do I keep the dog or do I let him go to the mother's house where he isn't so much wanted? What would you do? I feel like there is a reason why my path crossed with Buddy today. I just don't know why that is. Tomorrow is actually the 1 year marker of my grandpa's passing and that is when my dad started showing his symptoms. Is God sending me a companion to bring light to the reminiscing of dark memories? I don't know what to think. I just need lots of prayers, not only for myself but for Buddy and for my family as we mourn for my grandpa tomorrow. Sorry about this long email, but it was a crazy day and I just had to tell you about it. Please feel free to leave comments, because Buddy is going tomorrow by 5:30pm and I think at this point I'm just going to let him go. If you have any words of advice that would be great. Thank you for your prayers of support!
Much love,
Lacy

Ps. Please listen to this song by Jason Mraz. I'm crazy about it right now and I think the lyrics hit close to home with all that happened today. Our time is short and we all deserve to be loved!! http://www.youtube.com/watch?v=EkHTsc9PU2A&NR=1

I fell....:(

2008-07-20T21:41:00.000-07:00

I had a crazy busy weekend and it is not until now that I've been able to sit down and get on the computer. It actually didn't work out for me to go to BBQ days for the 5k race. That was a bummers. So I decided to go out for several hours and bike. I could've kept going all day. I don't even know how many miles I went, but I sure did go far. I even did some exploring and took a new trail that led me almost to downtown Minneapolis. The trail is called Cedar Lake Trail and it is part of the Grand Rounds of Minneapolis. The trails around this area are so amazing! I can hardly beleive that I'm in the cities. I feel so blessed! So yeah...my legs were like jellow when I got home, but it sure did feel good.

It was my plan to do a long nine mile run today, but I had a little bit of an accident. Sometimes I can really be a clutz and it's no fun. So I'll admit it....I fell going up the stairs and twisted my ankle. Can you believe it? Well it hurt all today so there was no way that I would be able to run with the pain. Instead I just layed around the pool at my roommate's parent's house all day and got lots of sun! It was a relaxing day! I think I needed that, because I feel like I still haven't had time to rest this summer. I'm always running all over the place. Anyway, I'm hoping that my ankle will feel better tomorrow so that I will be able to run the 9 miles I need to make up. Keep me in your prayers.

Much love,
Lacy

Don't worry...I'm back in the game!

2008-07-18T21:27:00.001-07:00

I was supposed to do a 4 mile run earlier this week, but my life didn't seem to want to slow down. However, since I'm no longer teaching summer school I'm hoping that I will be able to follow my running schedule more. Today I had the day off and I headed out early for my run. It was such a gorgeous morning! The sky was clear, the sun was shining, the breeze was refreshing and the sounds of the birds chirping brought me to so much peace. More than usual, I did lots of thinking during my run today. I couldn't stop praising God for the blessings that He has placed in my life. Eight months ago I felt the world crashing in on me and I was restrained so deep by the darkness that surrounded me. Losing my father was like a chunk of my heart was ripped out and I felt so hopeless, so alone and so afraid. However, now I can't help but smile every day for how God has helped me to rise above with so much happiness. I love where I live, I can't wait for my new position as a Spanish Immersion teacher and I feel great! However, I am the most thankful for the amazing people that God has placed in my life and who don't stop lifting me up with their love. It is because of you that I am where I am at today. Thank you to all my loved ones, family and friends!I also want to say thank you to those out there who I have never met, but continue to show their grace to give me hope. My sister just informed me today that she googled my father's name and found that a woman named Rachel Trockman donated a memorial of artwork in honor of my dad. (Check it out: http://www.hcmc.org/a_z/serviceleague/documents/Winter_08.pdf page 6) I was so amazed when I saw this. I have never met this woman, but my dad must have touched her heart just like he did for so many. God sure does work in amazing ways. Thank you! I also want to say another thank you to Lisa Spencer. You sure are an amazing woman! Even though we have never met face to face, I feel your love so near. I am so thankful to God for crossing our paths. Your words of encouragement give me so much hope. Thank you for your support! As you can see I have a lot to rejoice about right now. I actually ended up running 5 miles today, because I was lost in my happiness! I probably needed to do a little bit more since I took several days off. I'm still thinking about doing the 5k race tomorrow in Belle Plaine for BBQ days. If I decide to do so, wish me luck! I love you all so very much!
-Lacy

Dad's Progression

2008-07-17T21:02:00.000-07:00

During my research for more information about CJD I came upon this awesome website called CJD Voice. I posted the link under informative websites to the right. The site is very intriguing and has lots of relevant information. Check it out!! The part that I liked most about the site is that it has stories written by people who have experienced this disease affecting their loved one. This story below especially hit close to home for me. As far as we noticed, my dad didn't show as many earlier symptoms as this man but he sure did have the same loving spirit while he endured the disease. I'm going to post something on this site about my dad's story. Even though it is a horrific disease, my dad showed us the glory of God's grace. After reading this story below I'm sure that you will agree that the way this disease robs one of life is so heart-wrenching. I lived through this same deterioration of my dad and the painful thoughtsof it still fill my head every day. Let's not enable this disease to inflict so much pain and suffering on more people. Please continue with your support and spreading the news!

Ps. I want to say a big Thank You to my cousin April. I've been feeling this week that the whole interest with this blog has kind of been dying down a little. I haven't heard much from people as far as comments or donations. I've decided not to have expecations with how much I raise, because I figure that it is beyond beneficial to myself and others just to know more about this scary disease. However, just when I was starting to lose hope about the effectiveness of this blog, I opened my mail and God showed me with your generous donation that He is on my side and He will surpass any and all expectations. Thank you for shining His light for me today!

PPS. Please feel free to post comments whenever you feel the need to say something. I would appreciate hearing from my readers!

Thanks and much love,
Lacy

Dad's Progression

My dad's death and our CJD experience is still very painful at times. When my dad first started getting sick he knew something was wrong and worried because the doctors couldn't diagnosis the problem. Later, he was also frustrated he couldn't control his emotions or coordination. I certainly wish we would have known about CJD earlier.

In February 1997 my dad gave me a "What if I died in the near future" talk when we were on a trip together (I'd gone with him to drive since he was so tired). It disturbed me to hear my dad talk like he thought he was going to die. I told him I wasn't even going to think about him dying--at least not for another 30 years or so. He had such insight; he knew what it would be like handling things for my mother, getting his large estate settled, and getting along in life without him.

My dad's illness was such a mystery to our family and the doctors, too. My dad had kept a daily journal ever since they got married in 1950. When he was first in the hospital and the neurologists were searching for answers, I got the current journal book and we read it to try to see if he'd written about anything specific he hadn't shared with us. Unfortunately, his journal didn't reveal anything we didn't already know; however, it was sadly interesting to read of his tiredness, frustration, emotional feelings, etc., plus see his penmanship deteriorate over time.

After six weeks in the hospital, my dad died on June 21, 1997. We figure he showed vague early signs about two years before, with the main progression beginning a year before his death. Here's the basic progression:

Spring 1995: Development of asthma, persistent cough, became tired more easily, shaking in hands when performing tasks requiring hand-eye coordination such as writing, pouring a beverage or serving food on to his plate. The doctors called these "essential tremors" and believed the asthma medication caused them.

Fall 1995: My dad's yearly medical checkup showed high levels of protein in his blood. The doctors supposed this was because his body was still trying to repair bones in his foot which were severely broken in an accident several years ago. Blood tests also suggested hepatitis but couldn't confirm it. A liver biopsy showed cirrhosis as if he'd been a drinker for years (he never drank). The unusual blood proteins levels remained higher than normal and evened-off. Nothing was done about it before other symptoms started.

Fall 1995-Winter 1996: Several mild-to-severe asthma attacks, two of which required Emergency Room trips. He retired in December 1995, but continued to work full time. Rested more to alleviate the asthma and fatigue.

Late Spring-Early Summer 1996: Continued asthma, cough and hand tremors. Fatigue, increased signs of stress, occasional memory lapses, first signs of loss of appetite and beginning weight loss.

Summer and Fall 1996: Increased fatigue, occasional change in temperament, more signs of stress, vague change in eyesight, more frequent memory lapses, loss of interest in favorite activities, continued lack of appetite and weight loss.

Late Fall 1996-Winter 1997: Severe fatigue, flu-like symptoms with violent vomiting attacks which required trips to ER, periods of dizziness and loss of balance followed each vomiting attack, more frequent bouts with abnormal temperament, eyesight problems which doctor couldn't determine, continued weight loss.

Late Winter-Spring 1997: Incredible fatigue, heightened stress level, occasional periods of blank staring, startled expressions, sensitivity to light but also inability to get enough light in a room to read. Increased dizziness and loss of balance leading to trouble walking, driving, etc. Continued weight loss with no real interest in favorite foods. On May 2, 1997 one doctor suggested Multiple Sclerosis as a possible diagnosis. Emotional outbursts, occasional childlike inappropriateness in words and actions. Hallucinations on May 7, 1997. Everything was completely out-of-character for this dignified and active man.

Entered hospital first thing Thursday morning, May 8, 1997. First suspected diagnosis was a stroke. Daily--almost hourly--decline. First small jerking seizures followed another violent vomiting attack on May 11. Continual tests daily (MRI's, CAT-scans, bone scans, blood studies--you name the test, he had it done) with "nothing wrong" on every report. Seizures and occasional blank-outs for the next few days. Increased inability to think or reason clearly. Unable to recognize family members who were always there, but usually able to recognize visitors. Seizures increased dramatically in the fourth and fifth days in the hospital, with arms and neck twisting. Refused to eat on the fifth day. Within eight days of entering the hospital my dad was mostly unresponsive, with violent all-body seizures. He had to be restrained for several days to keep from tearing out the IV's.

We first learned of CJD on Sunday, May 18, 1997. Spinal fluid was sent for testing the next week, but the sample was lost in shipping--something our doctors nor we knew for over a week. Ten days after the first spinal fluid sample was collected, another round of samples was taken and shipped.

We looked for the moments when my dad's eyes showed he knew of his surroundings and who we were. Each of us--my mother, two sisters and I--had a chance to talk to him during these brief periods. The last time I spoke to my dad when he was aware, I was able to tell him how much I respected and loved him. While we were holding hands and arms, he was able to barely speak, "I love you, too." Those were the last words my dad said to me.

Any occasional momentary consciousness ended with vomiting attack on May 28. He then continued to decline in a coma with seizures. The test results finally confirmed CJD, but it came only about 10 days before his death. From the research I did after hearing about CJD, I didn't need the lab results--he had the classic symptoms and progression of the disease.

My dad died at age 66, on June 21, 1997 at 3:12 AM. At that time I lost my father who I deeply loved, respected and trusted, also my business partner and best friend. It is a loss I will feel for the rest of my life.

I've often wondered how my family would have been affected if my dad had died of something more "normal" like a heart attack, stroke, or even in an automobile accident, rather than from such a mysterious unknown disease as CJD. In this particular case it has been indeed hard.

CJD is so cruel. I saw my dad waste away and not be able to communicate with us. He had such a sharp mind, and we assumed it would be his body that would eventually break down, but his mind would always be there. CJD attacked and killed his brain, leaving his body to slowly die.

I think back to May 2, 1997 when a doctor first suggested Multiple Sclerosis as a possible diagnosis. I was in disbelief and numb by this news. My dad tried to put it into perspective by saying MS took years to run its course. He said, "At least its a slow killer." We had no idea it was really CJD and he'd be dead in six weeks.

I hope that recounting my dad's CJD progression will help doctors who are struggling to diagnose a patient. I further hope family members of CJD victims will be aware of any early signs they may see, as well as be able to see the progression of the disease.

Don in Atlanta
LDD1222@aol.com
Source: http://hometown.aol.com/larmstr853/cjdvoice/articles7.htm#Don

Please sign and pass along!!

2008-07-16T21:19:00.000-07:00

Click Here http://www.organicconsumers.org/action.cfm to Join thousands of citizens and sign the Mad Cow USA-Stop the Madness petition
Demand that the US Government adopt and enforce the same strict standards required by the European Union and Japan:
Mandatory testing for all cattle brought to slaughter, before they enter the food chain.
Ban the feeding of blood, manure, and slaughterhouse waste to animals.

Thank you!
Lacy

A Little Change of Plans...

2008-07-15T20:01:00.000-07:00

Well..I was supposed to do a 4 mile run today, but I kind of got carried away doing something else. Do you remember how I blogged that I had a craft night last Friday with my roommates? Well..we had some issues with the sewing machine so I didn't get everything that I wanted to finished. I called my grandma for help the second time around and she didn't know how to guide me over the phone. I've been anxious to finish up my works of art so I went over to my grandma's today and goodness did I learn a lot about sewing! She sure does know her stuff!! She helped me finish 4 pillows, 2 table runners and hem some jeans. I couldn't be happier for what came of my first attempt at sewing. Thank you so much grandma!!

However, since I decided to be so creative today I went ahead and got things in motion for the shirt that I will be wearing to spread the word about CJD while I'm running. I put my ideas into an email and sent them off to a girl I know who majored in graphic design and even worked at a printing company. She is excited to help me out. Thank you so much Holly and Reid!

I truly appreciate all of those who so kindly offer to help me. I'd be lost without your love. Thank you for your support!
Hugs,
Lacy

Minnesota lunchroom ground zero of the nation's largest beef recall!!!

2008-07-14T20:52:00.000-07:00

by Tim Nelson, Minnesota Public Radio
March 5, 2008

Congress opens hearings Wednesday looking into the recall of 140 million pounds of beef from a California meatpacker. Employees were suspected of slipping sick cows past U.S. Department of Agriculture inspectors for years. Parents across Minnesota hope their kids haven't been eating that tainted meat.

St. Paul, Minn. — There's no mystery to the meat in the cafeteria at J.J. Hill Elementary in St. Paul. The rotini, though -- that's another story.

Vivian Obee was eating it the other day.

"I really don't know what it's called, but I might as well just say noodles with sauce on them," she said. "The nurse made me get salad, and a banana and this garlic bread."

Cattle feedlotThis lunchroom is ground zero for what may be the largest food recall in history. More than 37 million pounds of suspect beef has gone to U.S. schools in the last two years.

St. Paul got almost 21 tons of it, more than any school district in the state. That's partly because the district depends heavily on government commodities to help keep its food costs down.

Since school started last September, kids and staff have eaten more than 17,000 pounds of recalled beef. It works out to about one spaghetti lunch per month for every student in the district.

"What we need to get, more than anything else, is more morality and more ethics in producing food."
- U of M food science professor Ted LabuzaThe suspect cattle were "downer" cows that couldn't walk into the Westland/Hallmark slaughter facility in Chino, Calif. "Downers" are thought to be at higher risk for E. coli and salmonella contamination, as well as mad cow disease.

No one has reported any illnesses linked to the meat, although symptoms can take years to show.

The thought of her second grader eating tainted beef gives pause to Vivian's mom, Natalie Obee. She and her husband used to own the Cafe 128, a well-known St. Paul restaurant. Obee knows food.

And while she's confident her daughter's school does a good job making safe meals, Obee said she can't help but rethink school lunch and the food industry in general.

"The fact that the USDA is doing buying for the school systems, and the USDA is allowing these kind of downed animals getting into the food system, I mean, clearly they do not have our children's best interests at heart. It kind of seems like they're falling to the bottom of the barrel," said Obee.

A security guard pulls the gate shut to the plantJean Ronnei, though, says kids are her top concern. She's head of student nutrition in St. Paul. Her staff makes enough meals to serve a full house at the both the Xcel Energy Center and the Target Center every day. Not all of them get eaten.

"Trying to please 40,000 palates in St. Paul schools proves challenging at times," Ronnei said.

But Ronnei says the food is as safe as anyone can make it.

"I've worked in restaurants. I've worked in health care. I've worked in school cafeterias. And I will tell you that there is no place I would rather eat than in a school cafeteria," said Ronnei.

In St. Paul, Ronnei says the schools go to every length to keep it that way.

*They track the temperature of perishables, from the trucks that bring it in to the pans that serve it up.

*All their meat is tested by an independent lab.

*They even make site visits to their produce suppliers.

"Our food safety program is absolutely top notch," Ronnei said. "We've had it in place since the '80s, and it gets more comprehensive, more in depth, year after year."

She said over the 19 years she's been in the school lunch business, she's also seen the USDA improve its own controls. In fact, fewer than two dozen of nearly 1,000 meatpackers in the country meet the higher standards required of school food suppliers.

But then came the recall from the Westland/Hallmark meatpacking plant in January.

"When we got notified of the beef recall, I thought, 'Here we go. We're going to have to do damage control.' And that's never a great place to have to be. If we don't have good safety, we have nothing," Ronnei said.

That concern is now prompting troubling questions in Washington.

Members of Congress say they want assurances the National School Lunch Program isn't buying up surplus or inferior food just because it's cheap, or to prop up agriculture. The program feeds more than 30 million children annually.

The National School Lunch Program is also meant to fight poverty. Free lunches are virtually the definition of being poor. That has critics wondering if there isn't a double standard for food safety.

Ted Labuza, a professor of food science at the University of Minnesota, doesn't think so. He points out that soups and other products made with the same beef are being pulled from grocery stores. Progresso soups, made by Minnesota-based General Mills, are on the recall list.

But no hearings on Capitol Hill or new inspectors are going to make the problem go away.

"I've been in many meat plants," Labuza said. "I have always seen inspectors there. I've never seen downer cattle get into the line. So something happened here that nobody's talking about yet. Eventually it's going to come out."

"Having these hearings is a political thing," Labuza continued. "This is a great time. We're coming up to elections, so we've got to protect our children. Get more inspectors -- things like that. What we need to get, more than anything else, is more morality and more ethics in producing food."

Food inspection officials from the USDA will testify Wednesday. Officials with the National School Lunch Program will be on Capitol Hill later this month.

Listen to feature audio here:http://minnesota.publicradio.org/display/web/2008/03/03/schoollunch/

4th Week of Training....DONE!!

2008-07-13T20:51:00.000-07:00

I stuck to my plan and went for my long run this morning and I'm so glad I did. God definitely answered my prayers today, because I felt so good when I was running. When I started my run these 4 girls who looked like they were serious runners went zooming by me and after a bit I actually caught up with them! I stuck with them all the way to the Lake Harriet Bandshell and I was 3 minutes ahead of my normal time. Then we headed our separate ways, but I was proud of myself for keeping up with them. I felt like I was in a race. It was like I was flying today. I was passing people left and right, which doesn't usually happen. I was even passing people that looked in better shape than myself! I guess I shouldn't underestimate the power of my mammoth legs. He he! Even towards the end of my run I was still going strong, because there was this girl who was running at the same speed as me and then I slowly started to inch ahead of her. When we got to the stop light and had to wait for traffic we caught up with each other again. Then we headed up a hill and I made my way ahead of her again, but she must of kicked her horses into gear because as I ended my loop around Lake Harriet she came up behind me out of the blue. However, I was determined to stay ahead and that's just what I did until I turned left towards home. I really felt like I was flying high today. I wasn't looking forward to the 9 miles, but it was a great run and a perfect day weather wise. I think something in me really wants to do a race and according to my training schedule I should be running a 5k race on Saturday. It actually works out that I might be joining my roommate for her home town celebration day called BBQ Days and they actually have a 5k run Saturday morning. I'm going to find out more details and see if I can sign up still. Wish me luck! I hope you all have a blessed start to your week. Don't stop spreading the word!
Love you lots,
Lacy

Don't worry...I'm still going strong!

2008-07-12T12:47:00.000-07:00

Hola a todos!
Even though it was my day off yesterday, I hardly got one minute to sit down nor do any form of exercise. I was busy running around all day meeting up with people, but I had a very good time. Last night my roommates and I had a craft night. If you know me, this doesn't happen much. I like to do crafts, but I don't really have the patience for it. Plus, I've never really used a sewing machine except ages ago in my 8th grade home ec class. So yeah....I have 4 pillows and 2 table runners ready to be sewn. I'm so proud of myself. Now..only if I could get the sewing machine to work properly.
Anyway, I decided to do my cross-training today since I didn't have much time yesterday. Once again I biked 20+ miles and it was an amazing day! It was a little windy, but that just made me work harder and that's ok. There were a lot of people on the trails today, especially because earlier there was a triathalon in the same area. This is really sad, but I actually saw a woman that must've been part of the triathalon because she had numbers on her body and it looked like she had a pretty bad fall. Her face and her arm were all scratched up. That must've hurt. Poor thing. I pray that she isn't it too much pain. That really made me think that I should take it easy when I'm bike riding and wear a helmet. Lots of people around here wear helmets and I guess it has never really phased me of something that I should do. However, I do book it on my bike and you never know what could pop out infront of you...right? Maybe I'll go get myself a helmet. It's better to be safe than sorry...right?
Tomorrow I will be running my long run of 9 miles and I probably will do so in the morning. Pray for good weather and pray for strength for me. Thanks for your continued support.
I love you all!
-Lacy

What is the US doing to ensure good, clean, safe meat?? Shocking!!

2008-07-10T20:11:00.000-07:00

USDA to Korea and the World, Eat That Untested Beef and Like It

Agriculture secretary's reassurance rings hollow in light of current industrial beef processing
The Houston Chronicle, June 19, 2008

U.S. Agriculture Secretary Ed Schafer recently assured Americans that USDA inspectors check "every single" processed American beef carcass. Charitably put, his statement is highly misleading. USDA inspections are perfunctory and fall far short of checks performed by other countries' meat watchdogs.

The issue arose after South Korea agreed this April to lift most of the restrictions it had placed on U.S. beef imports. That prompted intense protests by South Koreans who say they fear mad cow disease in U.S. beef. They want their government to negotiate a tougher deal or to scrap it.

In Texas last week touring meat processing plants, Secretary Schafer defended domestic meats as safe.

"Every single carcass that's processed is inspected by a USDA inspector," Schafer told reporters in San Antonio. "That beef is stamped A-OK, and we want to assure our consumers here in the United States, as well as our consumers ... in foreign countries, that we provide a good, clean, safe, abundant food supply here."

But what exactly is entailed in that inspection? According to the USDA, a government inspector is on site whenever cows are slaughtered and processed. The inspectors are supposed to look at every carcass and determine whether the meat is fit for human consumption. Basically, they have a look and maybe a sniff and a feel. That's it.

But even that cursory process might be more than consumers are actually getting. The Web abounds with reports, including firsthand accounts and interviews with reputable news organizations, in which USDA inspectors complain that they can't possibly carry out their job in a meaningful way. There are too few of them to deal with the number of cattle slaughtered each hour in modern meat-processing facilities.

The speed with which cattle are killed, skinned and cut up in these plants makes the job dangerous for the meat processors, to say nothing of inspectors who attempt to get close enough to a side of beef for a poke and a sniff. The high speed of operations sometimes does not allow cows to be properly stunned and bled to death by the time the skinning and cutting begins. That's not only cruel and inhumane, but also detrimental to food safety. Struggling animals mean meat falling on filthy floors, improper evisceration that spills feces onto meat and greater opportunities for cross-carcass contamination.

The shortage of inspectors also means that a USDA employee cannot always be available to inspect animals before they are killed to ensure that so-called downer cows are not processed. Cattle that cannot walk into the slaughterhouse because they are diseased or injured are more likely to be animals that carry bovine spongiform encephalopathy, commonly known as mad cow disease.

In February, the Humane Society of the United States released videotapes showing meat workers shocking nonambulatory cows, bumping them with forklifts and otherwise abusing them to force them onto their legs long enough to be certified for slaughter.

That's why many American consumers are voting with their pocketbooks for better meats. They are turning to local farmer's markets for cruelty-free meats from pasture-raised animals, forgoing meat from industrially raised cows, chickens and pigs that spend their lives packed into filthy cages, fed unhealthy diets and pumped full of antibiotics and hormones.

Increasingly available at local farmer's markets is beef from cows that are butchered humanely and in small numbers. As one farmer at Houston's Bayou City Farmer's Market put it one recent Saturday morning, "These are cows who have just one bad day."

Given the alternative practiced in processing plants, it's no wonder many foreign buyers of U.S. meat products are skeptical. Industrial beef producers employ practices that can be, in a word, repulsive. Until 1997, the United States permitted feeding cattle on beef waste products. It tested very few animals for mad cow disease, even though Europe was testing 10 million of its cattle each year, and the Japanese were testing each one. USDA allowed downer cattle into the food supply, a practice now banned. A 2004 ban on feeding cow's blood mixed with formula to calves and chicken droppings to cows was never put into practice.

According to The New York Times, the Agriculture Department has been fighting a lawsuit from a Kansas beef producer over the department's refusal to allow it to test for mad cow disease so that the producer can resume beef shipments to Japan.

None of this is reassuring. Instead of spouting empty rhetoric that U.S. beef is "the safest in the world," the USDA owes it to consumers to guarantee that meat meant for their dinner plates is processed without unnecessary cruelty and with standards that will produce a clean product that's safe to eat.
Source: http://www.organicconsumers.org/articles/article_13121.cfm

YouTube Video

2008-07-09T14:29:00.000-07:00

This is exactly why we need to know more!! This video is kind of long, but it is well worth watching. Please check it out! I know I'm going to go to the library and check out this book asap! I think you all should do the same.
Much love,
Lacy

Author of Mad Cow USA, John Stauber, answers questions about US beef safety concerns and 'prion' diseases (transmissible spongiform encephalopathies) and the correlation of Mad Cow with CJD.
http://www.youtube.com/watch?v=L4Ysi6EjJRk

It Starts Again...

2008-07-08T18:06:00.000-07:00

Hello dear friends and family,
I hope your week is starting out well. Mine is going great! Today I went on a field trip with my kindergartners to the science museum. We had such a blast. I haven't been there in such a long time and the omni theatre is so neat! I like being with my kindergartners, because they help to remind me that it's ok to be a kid sometimes! He he!
Another beautiful day for a run! I definitely will not complain about this weather we've been having. I absolutely love it! Today I had to run 4 miles and for the most part it went ok. My legs did kind of feel heavy today and my hips were a little achey. It will be nice to have these next two days of rest. I have night class tomorrow and Thursday so I won't be laying around the house being a couch potato! Bummers! I actually have two presentations to give on Thursday. Wish me luck! Please keep on checking the blog because I will continue to post insightful information about CJD. I hope you all are finding this blog to be very informative. Please don't stop spreading the news!!!
Much love,
Lacy

Ps. I want to say a big thank you to Lisa Spencer. The note that you sent me was so very uplifting and thoughtful. I even hung it up on my fridge to help motivate me. It just amazes me beyond belief that there is someone special all the way in Texas that is supporting me. Thank you! I'm so sorry about your mother. I know the hole in your heart will never go away, but know that her love for you goes far beyond the grave. I can feel my dad near at such unexpected times, but it always seems to be when I need the comfort of his love the most. We will never be abandoned from their love for us. Remember that! Thank you for your generous donation and your determination to spread the word. You are a blessing!

Alzheimers and CJD

2008-07-07T15:36:00.000-07:00

Alzheimer's and CJD
Michael Greger
16 June 1996

If indeed a form of Bovine Spongiform Encephalopathy (BSE) exists in the United States, one might expect to see a rise in the number of cases of Creutzfeldt-Jakob disease (CJD). CJD, however, is not a reportable illness in this country (Holman, 1995). Because the Centers for Disease Control (CDC) does not actively monitor the disease (Altman, 1996d) a rise similar to the one in Britain could be missed (Altman, 1996d).
Already, a number of U. S. CJD clusters have been found. In the largest known U. S. outbreak of sporadic cases to date(Flannery, 1996) a five-fold expected rate was found to be associated with cheese consumption in Pennsylvania's Lehigh Valley (Little, 1993) A striking increase in CJD was also reported in Florida (Berger, 1994) and there is an anecdotal report of an cluster in Oregon (Boule, 1996). An analysis of death certificates in a number of states, though, showed an overall stable and typical CJD incidence rate from 1979 to 1993 (World, 1996). To track the disease, the CDC has just initiated a four-state study of death certificates (Altman, 1996a), but since it is considered well known that death-certificate diagnoses are not always accurate (Davanpour, 1993) the survey may not provide an accurate assessment.

The true prevalence of prion diseases in this or any other country remains a mystery (Harrison, 1991). Compounding the uncertainty, autopsies are rarely performed on atypical dementias (Harrison, 1991), because medical professionals fear infection (Altman, 1996a). The officially reported rate in this country is less than 1 case in a million people per year (World, 1996). An informal survey of neuropathologists, however, registered a theoretical range of 2-12% of all dementias as actually CJD (Harrison, 1991). And hundreds of thousands of Americans suffer from severe dementias every year (Brayne, 1994; United, 1995). Two other studies average about a 3% CJD rate among dementia patients (Mahendra, 1987; Wade, 1987). A preliminary 1989 University of Pennsylvania study showed that 5% of patients diagnosed with dementia were actually dying from Creutzfeldt-Jakob disease (Boller, 1989). It would seem CJD is seriously underdiagnosed at present (Harrison, 1991).

The most common misdiagnosis of CJD is Alzheimer's disease (Harrison, 1991). CJD was even described by our government's top CJD researcher (Wlazelek, 1990a) as "Alzheimer's in fast forward (Wlazelek, 1990b)." The symptoms and pathology of both diseases overlap (Brown, 1989). There can be spongy changes in Alzheimer's, for example, and senile plaques in CJD (Brown, 1989). The causes may overlap as well; epidemiological evidence suggests that people eating meat more than four times a week for a prolonged period have a three times higher chance of suffering a dementia than long-time vegetarians (Giem, 1993), although this result may be confounded by vascular factors (Van Duijn, 1996).

Paul Brown, medical director for the U.S. Public Health Service (Gruzen, 1996), said that the brains of the young people who died from the new CJD variant in Britain even look like Alzheimer's brains (Hager, 1996). Stanley Prusinger, the scientist who coined the term prion, speculates Alzheimer's may in fact turn out to be a prion disease (Prusiner, 1984). In younger victims the disease could look like multiple sclerosis or a severe viral infection, according to Alzheimer's expert Gareth Roberts (Brain, 1996).

An estimated two to three million Americans are afflicted by Alzheimer's (Scully, 1993); it is the fourth leading cause of death among the elderly in the U.S (Perry, 1995). Twenty percent or more of people clinically diagnosed with Alzheimer's disease are found at autopsy to not have had Alzheimer's at all (McKhann, 1984). At Yale, out of 46 patients clinically diagnosed with Alzheimer's, 6 were proven to be CJD at autopsy (Manuelidis, 1989). In another post-mortem study 3 out of 12 "Alzheimer" patients actually died from a spongiform encephalopathy (Teixeira, 1995).

Carleton Gajdusek, who was awarded a Nobel Prize for his work with prion diseases (Manuelidis, 1985), estimates that 1% of people showing up in Alzheimer clinics actually have CJD (Folstein, 1983). That means that hundreds of people (Hoyert, 1996; United, 1995) may already be dying from mad cow disease each year in the United States.

Source: http://www.mad-cow.org/Alzheimer_cjd.html

Third week of training...DONE!! Lots more to go!

2008-07-06T21:24:00.000-07:00

I had a very lazy Sunday today. I hope all of you did as well. It's going to be hard to go back to work this week. Anyway, it was so hot and humid today that I decided to run later in the evening. I never would of made it if I ran in the dead heat of the afternoon. It was like a sauna outside. When I got home from a great weekend with my family, I unpacked my stuff and headed out for a run. It was still quite steamy at 7pm, but there was a tiny breeze that kept me going. I had a lot on my mind during my run, so it actually went by pretty fast. I usually don't stop for water, but I had to this time because of the heat. I was parched! The best part of my run was at the end when I decided to take a dip in Lake Harriet. I took off my shoes and socks, but went in with all of my running gear. I got some strange looks, especially when I walked home all soaking wet but I didn't care because that felt darn good! I wasn't really feeling like running today and I was even thinking about going tomorrow instead, but when I do something for my dad I get a whole new motivation. I don't want to let him down. So I'm happy to say now that I did it and I definitely could feel him at my side pushing me along.

I want to say thank you to John Wilson who left a comment in my last post. Your message was so very sweet. It warms my heart that somebody I've never met is moved by my story and wants to donate to the cause. Your support is so deeply appreciated. Thanks again to both you and your daughter and I'm so sorry for your loss. Your wife is definitely shining through your hearts.

Much love,
Lacy

This is a long reading, but please check it out!!

2008-07-05T07:00:00.000-07:00

Hey all-
I'm still resting and enjoying some time home with my family. I hope you all are enjoying your 4th of July weekend! Tomorrow will be my long run of 8 miles so I will do some yoga today to get my muscles flexible and ready to go. Wish me luck!

I've been doing more research on CJD and I would like you to read this article about the link between CJD & BSE (Mad Cow's Disease)and also check out the links below to see what the government is doing to monitor the issue. I was shocked to read the findings. I don't want all of you to think that I'm totally believing that my dad's CJD diagnosis is a direct result of eating contaminated meat. I know that the autopsy results say his form was "sporadic", but that really doesn't help at all. I know that there isn't always an explanation for the turns that life takes, but there is information out there that may help me find out more. Before I was just in a daze that my dad truly passed away and now I'm taking the initiative to understand what is being found or said about CJD. This is such a scary disease and I don't want anybody to have to go through what my dad endured. If we are all at risk and there are measures we can take lower that, then we need to know! Please read the information below.

Sincerely,
Lacy

MAD COW DISEASE Written by, Suzanne Sutton in 1997

Mad Cow Disease, known scientifically as bovine spongiform encephalopathy (BSE) in cattle, is an incurable spongy degenaration of the brain and central nervous system. A similar complex disease in humans, known as Creutzfeldt-Jakob Disease (CJD), acts like an accelerated form of Alzheimer's, and is characterized by an irreversible degeneration of brain tissue-holes formed in the brain, disabling and finally killing the victim. The fear of this unusually cruel and fatal neurological disease has sent shock waves throughout Europe and around the globe, creating one of the biggest consumer panics ever experienced in the industrialized world.

Q. How do cattle and humans contract this disease?

A. For decades British and North American farmers have been feeding their beef and dairy cattle, which are of course herbivores, cheap protein supplements made from things which include sheep brains, spinal cords, and other animal parts. Sheep, as any farmer will testify, have for centuries carried scrapie--a fatal, degenerative brain disease, which is remarkably similar to Mad Cow Disease and CJD. It is feared that this disease can be transmitted to humans who eat meat from infected cattle.

Since 1989 Britain has banned sheep offal (the ground remains of the dead animal) from cattle feed. Indeed, all mammal tissue has been banned from all agricultural feed in that country, and, furthermore, the World Health Organization is now endorsing a ban for all countries. However, in the United States this practice continues up to the present time as a routine process, designed to boost milk and meat production. Indeed, offal from sheep, cattle and other animals, as well as animal feces, is routinely fed to American food animals (cattle, pigs, poultry and fish) in the form of rendered pellets, powder or meal. In addition, massive quantities of blood meal, bone meal and other animal byproducts find their way into food animal's feed. It is grossly unnatural and dangerous to feed blood and other animal parts to cattle, which are natural vegetarians. Animal diseases may very well be passed on in the process.

Various diseases may also be transmitted to human beings who eat infected animals. Indeed, from feed, to cow, to the human brain, appears to be the progression of Mad Cow Disease, which has leaped across the species barrier to become a varian of CJD.

Cattle with the disease show symptoms of staggering, drooling, aggression, and confused behavior, appearing to have gone "mad." Afflicted humans show symptoms similar to Alzheimer's disease--dementia, confusion, convulsions, loss of speech, sight, and hearing, and ending with a coma and death. This disease, one of the most mysterious known to human beings, is always fatal and there is no treatment for it. The incubation period seems to be four to thrty years.

The causative agent appears to be a deformed molecule called a "prion," (pronounced PREE-on), a mysterious and abnormal infectious protein. This strange-acting, never-before-seen infectious agent, which is neither a bacteria nor a virus, is distinct from anything encountered before--an infectious agent that defies the accepted rules of nature. Smaller than the tiniest virus, they do not contain nucleic acid which makes up the RNA and DNA that carry the genetic codes of normal viruses, bacteria, plants, cows, humans and virtually all other living things. Yet they are able to replicate and spread, but do not activate an immune response. Unfortunately, they are highly resistant to heat, UV light, radiation and most common chemical disinfectants.

Q. Surely the proper authorities in this country are taking actions to prevent this disease from gaining a foothold here. Is not this the case?

A. Tragically, this is not so. The very practice that apparently caused and fostered Mad Cow Disease in England--feeding cattle processed remains of other animals--is commonplace in America. The image of contented cows grazing on sweet grass and hay should forever be dispelled. No "Green Acres" here! Ground up carcasses of sheep, cows and other animals, including their tonsils, intestines, spinal cords, brains, spleens, and so on, are a regular part of the daily bill of fare of food animals, which are mass produced by intensive, risky, pro-duction-driven, farming methods. The poor aimals are crowded and confined by the thousands on factory-style farms. These, and other horrors of modern animal food production, give rise to various chronic, insidious, and complex groups of diseases.

Recently, the United States Department of Agriculture (USDA) considered a ban on feeding cows to cows. However, according to an internal USDA document, the agency dismissed the ban because "the cost to the livestock and tendering industries would be substantial."[1] Clearly, this governmental agency has placed the financial interests of the influential, multibillion-dollar livestock industry ahead of public health.

However, a ban on this procedure may not be the answer to the problem. Even in Great Britain, where a mandatory ban has been in effect since 1989, some farmers have illicitly been feeding their cattle rendered animal parts. This disturbing reality has always been the case. Any ban is totally dependent on individual and industrial compliance.

More information from this article can be found at this link: http://www.shepherds-rod-message.org/health/mad.html

These links below contain lots of information of the government's role in monitoring this disease.
http://www.gao.gov/new.items/d06157r.pdf
http://www.gao.gov/new.items/d05101.pdf
http://www.gao.gov/new.items/d02183.pdf
http://www.ratical.org/co-globalize/MaeWanHo/bse.txt

Yeah...I didn't fall!!

2008-07-03T17:26:00.001-07:00

I want to start of by saying a personal thank you to the person who made a generous donation. It was such a pleasant surprise when I checked the account balance. That definitely brought a smile to my face. Thank you!

Today I did some cross-training and instead of running 6 miles, I rollerbladed about 12. My roommates and I were all home at the same time which never really happens. So we decided to go to rollerblade together. Well...they were going more leisurely and I wanted to go faster to put in a good work out. They ended up just going around Lake Harriet and taking a dip in the water. I proceeded to go to Lake Calhoun and I ended up going around it 2 times. I was on a roll. I felt like I was flying! However, I was a little in pain towards the end because I could feel a blister coming on strong. It is just a little bitty one so I think I'll be ok. I'm most thankful that I didn't fall. I'm not very good at using my brakes and it freaks me out when I reach the bumps at the end of a sidewalk. I always feel like I'm going to fall flat on my face and make a fool of myself in front of traffic. How embarrassing. I was lucky this time and made it home in one piece. Now I have two days of rest and I sunday I will run 8 miles. I hope it is a nice day. Wish me luck. Please keep on checking the blog because I will still be posting information to keep you all up to date. Thank you for your support. I hope you have a great 4th of July weekend!
Much love,
Lacy

This is very informative!

2008-07-02T11:54:00.001-07:00

GRAND ROUNDS PRESENTATION

Pathology's Dr. Nitya Ghatak Presents
Prion Diseases

Nitya Ghatak, MD, Professor of Neuropathology at Virginia Commonwealth University presented Prion Diseases: From Scrapie to Mad Cow, February 20 at the Pathology Grand Rounds.

"Without question," Dr. Ghatak began, "prion theory is one of the most revolutionary ideas in the study of infectious diseases. It captures the imagination. How can a protein, a substance that has no RNA nor DNA, infect individuals between and across the species barrier by itself?" Some scientists, he added, don't believe it can. They are interested in prions as markers of an infectious agent, possibly a slow virus, that has yet to be identified.

"I'd like to walk you through the history behind prion disease theory," he said. Then I'll bring you up-to-date, sharing the current thinking about prions today."

The major characters in this history, he explained, are goats, sheep, mankind and cows. The goats, the sheep and mankind all got sick. In 1959 it was discovered their stories overlapped when a research veterinarian, Dr. William Hadlow, made the observation that their brain changes were similar.

The goats and sheep had scrapie, a well known neurological disease described by Europeans in the 1750s. The sick animals showed behavioral changes, then progressively worsening ataxia (tremors), general neurological degeneration and death.

The people had two rare diseases with similar symptoms. One described in the 1920s--by German physicians Hans Gerhard Creutzfeldt and Alfons Jakob--was aptly named Creutzfeldt-Jakob disease (CJD). The second, described in the 1950s, was called "Kuru," meaning "to tremble."

Creutzfeldt-Jakob had a wide range of manifestations. Dr. Ghatak pointed out, "The same disease was called by different names, depending on the form that was present." CJD was rare. Chances of getting it were described as one in a million. It was sporadic and uniformly fatal, usually within weeks or months. Most of its victims were older than fifty years of age. No one had any idea of its cause.

CJD victims showed behavioral changes, rapidly developing dementia, ataxia, blindness, coma, then death. During autopsy neurologists found major changes in the victim's brains. They were spongiform. "Literally, full of little holes," said Dr. Ghatak. There was a loss of neurons and reactive astrocytes were present. But, no inflammation, as one might expect from an infectious agent. Varying neurologic signs and symptoms were present depending on which part of the brain was involved.

Then they found Kuru, he continued, an exotic disease of only one people in the world--the Fore people of Papua, New Guinea. Its victims were the women and children who ritualistically consumed human brain in a funereal practice honoring the dead. Its symptoms were behavioral changes, ataxia, progressive neurological degeneration and death within a year.

Dr. Vincent Zigas a medical officer in New Guinea and Dr. D. Carleton Gajdusek a pediatrician and virologist who later won the Nobel Prize for his work, were the first to study this disease called "the laughing death" after one of its symptoms. In 1959, Dr. Igor Klatzo of the National Institutes of Health explained the neuropathology of Kuru and added an observation not yet documented, the presence of amyloid in the form of congophilic plaques in the brains of Kuru victims.

The collective of these different diseases gave rise to the concept of transmissible spongiform encephalitis or TSE. Interestingly, in the 1960s, since the subject of transmissibility was very popular among researchers and clinicians at the time, Dr. Ghatak and his colleagues at the Albert Einstein College of Medicine, Bronx, NY, sent tissue from two CJD cases they had to Dr. Gajdusek. They never heard back, Dr. Ghatak said.

It was in 1982 that Dr. Stanley Prusiner, Professor of Neurology, Virology, and Biochemistry at the University of California San Francisco developed Prion Theory for which he later won the Nobel Prize. He isolated what he believed to be the transmissible agent from hamster brains infected with scrapie--a misfolded protein particle. He named it PRION for proteinaceous infectious particles.

According to the theory, the prion protein, PRNP, found normally in animals in the form of PrPc, becomes conformationally modified into its isoform PrPsc, considered "infectious." The conformational changes make it resistant to enzyme digestion. Its "infectious" character arises when one prion acts as a template for the creation of more prions presumably with the help of a pathological chaperone. These prions aggregate and form amyloid giving rise to the typical symptoms.

Finally, as the history goes--the cows enter the picture. They became major players when another form of TSE, bovine spongiform encephalitis (BSE), commonly called "mad cow disease," showed up in the United Kingdom in 1985. The cows had been given high-protein feed made from the ground-up carcasses of sheep. Like other TSEs, BSE caused a change in temperament, abnormal posture, lack of coordination, difficulty in rising and finally death for the cows.

The tragedy is that BSE crossed the species barrier into humans causing, "A peculiar kind of CJD named variant CJD (vCJD)," said Dr. Ghatak. Its victims were atypically young. In fact, the connection was first made in a 19 year old man diagnosed with it. It sparked a wave of fear that led to the slaughter of 4.5m cattle in the UK and across Europe. A total of 153 people had died by 2003. All but 10 of the victims were from the UK.

The symptoms of vCJD are familiar part of the story by now. It first presents as a psychiatric problem, explained Dr. Ghatak, with dementia, anxiety, and depression. Then symptoms of progressive neurodegeneration appear including ataxia, coma and death within one year of onset. The incubation period can be long--as long as 20 to 30years. Pathologically, PrPsc accumulation is found in lymphoid tissue including the tonsils. The brain is spongiform and shows neuronal loss and amyloid plagues.

Phenotypes of CJD are modified by 2 factors, the genotype of PRNP polymorphic codon 129, and the type of PrPsc, either Type 1 and Type 2. So far, all tested cases of vCJD have been homozygous for methionine.

Today, CJDs are generally classified as familial, sporadic, iatrogenic, or variant. Familial, or inherited, forms include fatal familial insomnia (FFI) and Gertsman-Straussler-Scheinker (GSS) Syndrome. At least twenty different mutations are known. Sporadic CJD (sCJD) accounts for 90% of the cases. In the recent past, iatrogenic CJD arose in patients who had received tissue grafts, particularly cornea and dura, and human growth hormone.

The mystery remains, said Dr. Ghatak, but evidence is building that TSE's are not caused by prions acting alone. "There's something," he said, "about the conversion process from PrPc to PrPsc at the cell membrane...

For more information about his work, you may contact Dr. Ghatak at nrghatak@vcu.edu.
Source: http://www.pathology.vcu.edu/news/grand51.html

Lost Between the Cracks....

2008-07-01T19:34:00.000-07:00

It was a long day and a long evening at the library, but here I am eager to write to all of you about something that has been on my mind.

Last week I was feeling very sad about my dad's passing. This journey of grief is definitely a rollercoaster. There are days that I feel so good and there are days that I feel so low. I think about my dad almost everyday, but doing this blog has given me some discontent about the situation. Even though it feels like just yesterday, my dad passed away 8 months ago now. I will never completely jump over this hurdle of missing my dad, but I'm slowly coming out of the stage of unconsciousness. Before it was all just a bad dream and now, the dark clouds are starting to clear and give way to light.

So the more I sit down to investigate about CJD with this blog the more I feel like my dad was lost between the cracks. I do believe that this was God's plan for my dad, but I also believe that He gave us free will. This free will can lead us to make decisions that don't come from God and therefore, perpetuate death and destruction in the world. This is clearly represented with war, pollution, murder and among many others, disease. This is my own personal belief.

With this in mind, I've been feeling trapped behind all the unknown and conflicting information about CJD. This especially hit close to home, when I got to thinking about how we still haven't received my dad's autopsy results. My step-mom is the power of attorney so really the whole thing is out of my hands. However, I went ahead and did some investigation on my own. Several sources that I found stated that autopsy results and testing for CJD should take no more than 10 weeks. It has obviously been way longer than that and that makes me feel uneasy and confused.

I called my step-mom to discuss with her about my feelings and she filled me in on the situation. It turns out that the CJD survelliance center and my dad's doctor have been sending her through hoops. When she contacted the surveillance center they said that the autopsy results can only be given to the patient's doctor. From there, my step-mom understood that the results would be faxed to my dad's doctor. She went several weeks and never heard a word from Dr. Hill. She called him and he stated that he never received a fax. She then called the surveillance center and they supposedly said that they don't fax the results; they only send them by mail. Can you believe this run around? This was my dad's life; it should've been handled with the utmost care!

My step-mom realized after talking to us that this all didn't add up and it wasn't fair. She pressed the issue more and finally, recieved some confirmed information this Monday. He stated that my dad's autopsy and test results were finished back in March, but the fax that the surveillance center supposedly sent never made its way to his office. Can you believe this?? Well, he confirmed that my dad was diagnosed with Sporadic CJD. This calmed my worries and at the same time, made me feel very suspicious. I'm beyond thankful that it is not the familial variant, but now I'm full of many questions.

Why did this whole autopsy take so long? This is a rare disease and this was a person's life, you think they would have been more careful. This just frustrates me. Being that he passed away from the Sporadic variant of CJD means that there is basically no hard core fact as to why it happened (Just like some people suddenly acquire cancer or have a heart attack for no apparent reason). However, all of this talk about Mad Cow's disease and how it has been found in animals here, but there are no confirmed cases of this variant in humans definitely fills me with doubt. It just doesn't make sense. My dad was an avid hunter and ate all sorts of meat, including deer, elk, buffalo, etc. You name it, he ate it.

Are they hiding something from us? (They being the USDA or the government) Are they just saying that it is sporadic so that we don't question about Mad Cow's disease?

We need to know more!! If there is more than just what we see on the surface, than we all are at risk for CJD.

Please continue to spread the word!
-Lacy

Ps. I had the radio on as I was writing this and one of my dad's songs was played "Listen to the music". I totally felt him here with me at that moment. Is he telling me that I'm heading in the right direction with all of this?

Here starts the 3rd week!

2008-06-30T18:52:00.001-07:00

Today I jumped ahead schedule and did my four mile run. My friend Michelle and I have been planning for the past week to meet up and go for a run together. Today was the day that worked out for both of us and we actually didn't meet up until 7pm. Michelle is my friend from high school and she will be running the marathon with me. She has ran several marathons so she is a pro and will be my motivator. I'm so thankful to have her by my side. Michelle brought her two dogs on the run with us and that was quite interesting. They started off so fast and I was thinking that I'd never make it the whole 4 miles at this pace. She assured me that they would slow down after a bit and thankfully, they did. There were a lot of people walking around Lake Harriet this evening so it was quite a maze running between and around people. Michelle gave me some good tips to remember when training for a marathon, like remembering to take note of my body. If I'm too sore to run or I hurt then it is ok to take a break. It is most important to take care of your body and focus on long runs. It is ok to miss a short run here and there if need be. She said as long as I keep running and keep moving up with my miles I will be just fine. I feel like I'm off to a good start. Tomorrow I will be taking a rest day because I have to catch up on a lot of homework for my graduate classes. I'm planning on going to the library right after teaching summer school and staying there until it closes at 9:30pm. It is going to be a long day, but I just need to sit down and focus to really get things done. Wish me luck! Please still check out my blog tomorrow. I will be posting a commentary of something that has been on my mind lately with my dad and CJD. Please take care!
Much love,
Lacy

Ps. I want to send a big THANK YOU and hug to my Auntie Pam and my Uncle Bob for their generous donation. I appreciate your support! I love you lots!

My second week of training...FINISHED!!

2008-06-29T15:15:00.000-07:00

I didn't post yesterday because the day just flew by so fast and I didn't get a chance to sit down and type. I actually spent the morning and part of the afternoon going to garage sales with my roommate. We were mainly looking for things for our apartment, but sadly I came home with lots of teacher stuff and of course a few things for my nephew. However, I only spent a wopping $6.00. I love garage sales!! They poop me out though so when I came home I sat on the couch and instantly dozed off. I woke up 2 hours later and all in a rush, because I had to do some training before I met up with some friends for dinner. Thank goodness it all worked out and I was able to bike the same 20+ mile route that I did last week. It wasn't as great of a ride because it was chilly and kind of drizzling off and on, but I made it through. However, today couldn't have been better. It was sunny and hot, but yet there was a breeze that cooled me off. I definitely felt very strong and full of energy as I ran the trails and before I knew it I was home! The seven miles went by fast and it felt good! I finished my second week of training, but there is still lots to go. I ask that you keep me in your prayers that I continue to seek motivation from God and that He blesses me with health to complete this marathon for my dad. I thank you all for your continued support. I wouldn't be able to do it without your love. Thanks so much!
Take care,
Lacy

Here I go again!

2008-06-27T14:07:00.000-07:00

I had a very random 4 mile run today. I was kind of in my own world and definitely people watching as I strolled along. There were a lot of people spending time at Lake Harriet, especially young kids. This is wierd, but I'm going to share it with you anyway. I saw 2 girls and 2 boys walking around the lake and they couldn't have been more than 13 years old. I saw them from a distance and as I approached them, I was very surprised to see how flirtacious they were with each other. One part of me remembers those days back in middle school when all the girls were crazy over some boy or another, but then I was thinking boy aren't they young?? It was like seeing them gave me some feeling of nostalgia and at the same time, made me feel very old. That was wierd...I know. Anyway, I also took a little detour during my run and stopped to gaze at the beautiful flowers in full bloom at the Lake Harriet Rose Garden. What an amazing place! Then, I saw a couple being all sly and suspicious and as soon as I turned my back, they tore a rose from the bush and started walking away. I thought that was rude, but went about my own business and headed back home. Pretty random run...eh?

I also want to say a huge THANK YOU to my loving mother who made gracious donation. You are great! I love you!

Keep spreading the word!

Much love,
Lacy

Please Read this Article by Terry Singeltary!!

2008-06-26T14:35:00.000-07:00

Hey all-
Today is another day of rest, but I'm definitely not laying around the house or sleeping. I'm actually trying to get a few things done before my night class at 5pm. Anyway, I would like all of you to read this article below. It definitely opens your eyes to many other unanswered questions about this disease. The author of this article also has a blog site which has so much information about CJD. He has done an awesome job with his investigations. I actually contacted him and we plan to unite forces in some way. Please check out his blog as well if you are interested in knowing more about the mysteries behind CJD.
http://www.blogger.com/profile/06986622967539963260

Why Americans, As Well as Koreans, Should Be Worried About Mad Cow Tainted USA Beef
By Terry S. Singeltary Sr.
May 15, 2008

Web Note: This is an important commentary by Terry S. Singeltary Sr., on a recent Business Week story on the controversy in South Korea over their government's lifting on the ban on conventional (non-organic) beef, despite the fact that the USDA is still allowing slaughterhouse waste and blood and manure to be fed to cows, and refusing to test all cows at slaughter. See the Mad Cow section of the OCA website for in-depth information. Terry is a regular blogger on the OCA website on Mad Cow issues.

One Korean official says the probability of a human being catching a mad cow disease by eating U.S. beef is like the one of a golf player scoring a hole-in-one and then being killed by lightning.

this is typical BSe. you here industry groups comment 'your more likely to get hit by a car than die from CJD'. well, maybe so, but my mother and many more did not die from getting hit by a car, they died from CJD, my mothers being the hvCJD (confirmed), and my neighbors mother died from CJD (confirmed). the UKBSEnvCJD _only_ theory is incorrect. there are more strains of mad cow than the UK BSE in beef to nvCJD in humans in the UK. The deception by the USDA, FDA, and the Bush administration about mad cow disease, CJD, and all Transmissible Spongiform Encephalopathy over the past 8 years have been outrageous, to a point of being criminal. I am vested in nothing, but the truth.

"South Korea may demand revision of US beef import pact"

"The agreement, struck last month, has been widely criticized as making too"

"many concessions to the United States"

THE PEOPLE of Korea _should_ be mad about the importing of USA beef into their Country. can you believe these regulations? even IF a BSE case(s) are documented in the USA, the people of Korea still cannot suspend the importing of U.S. beef, NO matter how many more mad cows the USA finds, until a thorough epidemiological investigation is finished. please remember, it took over a year and literally an act of congress to confirm the atypical mad cow in Texas before they finally finish that epidemiological investigation, and even after all that, the Koreans still cannot ban USA beef, until the OIE recognizes an adverse change in the classification of the U.S. BSE status. Considering the USDA and the OIE collaborated to seal the deal of the BSE MRR policy (the legal trading of all strains of TSE globally, just for commodities and futures sake, human health was not even considered), I doubt the OIE would ever change the BSE status for the USA, no matter how many more mad cows are found. It's all about money folks.

WE are talking years now, before the Koreans could ever suspend USA beef due to a BSE case(s) ever being documented in the USA, due to these stupid regulations. This is nothing more than FORCE FEEDING KOREA USDA MAD COW BEEF, i.e. all for a dollar, to hell with human health on a disease with an incubation period of years if not a decade or more.

Please remember, the last two mad cows documented in the USA i.e. Alabama and Texas, both were of the 'atypical' BSE strain, and immediately after that, the USDA shut down the testing from 470,000 to 40,000 in the U.S. in 2007 out of about 35 million cattle slaughtered. also, science is showing that some of these atypical cases are more virulent to humans than the typical UK BSE strain ;

***Atypical forms of BSE have emerged which, although rare, appear to be more virulent than the classical BSE that causes vCJD.***

Progress Report from the National Prion Disease Pathology Surveillance Center

An Update from Stephen M. Sergay, MB, BCh & Pierluigi Gambetti, MD

April 3, 2008

http://www.aan.com/news/?event=read&article_id=4397&page=...

IF BSE is not in the USA (just not documented for many different reasons), and only atypical BSE is in the USA (plus CWD, plus, many strains of Scrapie, and Now the Nor-98 documented in 5 different states, plus TME, then why would human mad cow in the USA look like the UK nvCJD from UK BSE cows ? it was shown long ago in studies at Mission Texas that experimental transmission of USA Scrapie to USA Bovine, DID NOT LOOK LIKE UK BSE. so again, in short, why would human mad cow in the USA look like human mad cow in the UK i.e. the (nvCJD). however, I believe that BSE has been in the USA untested and undocumented for years. why on earth then does the USDA refuse to allow creekstone or anyone else test their product? simple, if you don't look/test, you don't find.

ONE only has to read how the USDA et al have legally blocked, blundered, botched, mismanaged, bungled, floundered, and flat out manipulated, the testing in the infamous June 2004 enhanced cover-up program for mad cow surveillance and testing. I mean, I am not really to hip on THE INDUSTRY, testing for mad cow disease, and what that program might consist of, but anything is better than nothing at all. ...

Tuesday, May 13, 2008

Concerned Americans against Mad Cow Disease STATEMENT OF SOLIDARITY with Koreans May 13, 2008

http://usdavskorea.blogspot.com/2008/05/concerned-america...

http://flounder068.vox.com/library/post/concerned-america...

http://www.koreantopnews.com/story.php?title=USDA_VS_KORE...

BSE YOUNGEST AGE STATISTICS UNDER 30 MONTHS

http://bseyoungestage.blogspot.com/

http://flounder068.vox.com/library/post/bse-youngest-age-...

with kindest regards, I am sincerely,

Terry S. Singeltary Sr. P.O. Box 42 Bacliff, Texas USA 77518

Thank you!!

2008-06-25T20:46:00.000-07:00

I just want to say a big THANK YOU to the person who made the first donation! I can't even tell you how happy it made me to see that the account balance went up. You definitely made my day! Your generousity is so greatly appreciated!

Today was a rest day so I did just that. Wait...actually that would be lying. I taught summer school until 2pm, then I went to the library to do some homework and lastly, I went to my night class from 5-9pm. My brain got a lot of exercise today! Tomorrow I will be taking another rest day, because I have my other night class and I have to catch up on some homework before it starts at 5pm. I will be back on schedule on Friday. Please keep on checking the site because I will still be posting inciteful information about CJD.

Don't stop spreading the news!

Thank you and much love,
Lacy

PS. Please read this article about a man from Oklahoma that was diagnosed with CJD. Especially, read the comments at the end of the article on the second page. What "Dr8237" says is very interesting. A part of me does feel the same way that there is some sort of conspiracy behind this disease. Check out the video of the news story on the right hand side of the site. It is especially intriguing!

http://www.fox23.com/content/flashplayer-localnews/story.aspx?content_id=a687aebe-bf26-4ec6-baf2-407b42e7fad2

Check out this very informative pamphlet!!

2008-06-24T12:52:00.001-07:00

Just click on the image to make it bigger. FYI- You can also click on the slideshow on the bottom of the page to see individual photos in a bigger size.

Still going strong!

2008-06-23T19:23:00.000-07:00

Today was technically supposed to be a rest day, but I went ahead and ran 4 miles anyway. He he!! I actually jumped ahead a day, because tomorrow my step-mom, my brother and my sister are coming down to visit me and we are going to play tennis and go for something to eat. So I have to use tomorrow as my rest day because I won't have time to run. My hips were feeling kind of sore today, but for the most part the run went well. This time I put on some R&B music and really belted out some tunes while I was running! I'm sure some people didn't enjoy that!! He he! I'm happy to report that things are going well!

On a sad note, I called the bank today to set up online banking for the benefit account and they informed me that the balance is still at $25. This is the amount that I deposited to open the account so essentially no money has been raised. I was really hoping for something. I know that this blog has only been up and running for 1 week and that the word is still being spread. However, I can't do this by myself. We need more answers for this scary disease and for that, I need your help. I'm not good at this whole marketing thing so if you have any ideas, please send them my way. Any sort of contribution you can make, no matter how small or how big, will be greatly apprecaited! Thanks for your continued support!

Ps. I was thinking of signing up for some 5k and 10k races around the area to get some more practice for my training. I also thought it would be a great way to spread the word about my site and why I'm running. To do that, I was going to have a shirt made that I would wear for all my runs. Maybe I should do two shirts because they might get sweaty! He he! Do any of you have any ideas for how I should create the shirt. I was thinking it could be some bright color with white writing that says on the front "I run for CJD" and then the back would have some statistic about it like "???? died from CJD in Minnesota in the last year, and that includes my father". "Do you want to know more?" "www.runlacyrunforcjd.blogspot.com". What do you think about that idea? I'd appreciate any input!

Blessings to all,
Lacy

Yippee...I completed my first week of training!!

2008-06-23T05:42:00.000-07:00

First I want to say thank you to all of you out there for your continued support. I went to a family wedding this weekend and many told me that they are always checking out my blog and passing on the site to others they know. Thank you for keeping the word going and please don't stop.

Today wasn't as nice of a day as my runs earlier this week, but I can't complain at all. At least it is not 30 degrees below zero! Thank goodness! I did a 6 mile run today and I went the same route to Lake Nakomis as I did on Tuesday. I often use my runs to spend time in worship to God. I put praise music on my ipod and I connect with God for enlightenment and peace of mind. As always He never lets me down and keeps me thirsting for more. My prayers today were for strength and energy not only as I embark on this marathon training, but also for my new job as a Kindergarten Spanish Immersion teacher in Minnetonka. Worries of my little experience often cloud my thoughts and make me quite nervous and doubtful. God helps me to remember that nothing is impossible with Him at my side. He has made this job opportunity happen for me in my life, because He knows that I can do it.

He reminded me of this fact when I was running today. For one of my graduate courses that I'm taking this summer, I have been assigned to look for and share with the class something that captures my interest with mathematics and science in my life. To tell you the truth I don't do a lot of math and science in my everyday life and I hardly turn on the TV to see what is going on in the news so I couldn't really seem to think of anything. They say that math and science constantly surround you, but I just couldn't see it. Anyway, as I was running and praying I passed two little boys that were selling lemonade. One of them came running towards me and asked if I would like some lemonade. I sadly responded that I didn't have any money and he said ok and walked back to his lemonade stand. I felt so bad, but than an idea came to my mind. I could do this as a math assignment with my students. They could sell lemonade and practice their math skills with money and also they could do ratios to see how many people they could serve with one liter of lemonade. They could even do some comparing and contrasting of percentages by testing out different locations to see if they sell more or less. Wait there are still more ideas. This could even be a science lesson as well where the students make their own lemonade and test how sugar dissolves in water and what factors aid or hinder the process. Wowzers...eh? God works in amazing ways! He definitely reminded me that I am capable!

I just thought I'd share that with all of you. I still have 15 weeks left of training so I pray that God continues to give me the strength to make anything possible.

Much love,
Lacy

PS. I just noticed that the zip code in my address is wrong. It is not 55410, but 55419. So if you have sent a donation to my address with that zip code it may get returned and you will have to correct it. Sorry :(.

How is CJD treated??

2008-06-21T11:04:00.000-07:00

There is no treatment other than supportive care. The vast majority of patients die within one year of onset of illness.

CJD Deaths by Year
Number of CJD-related Deaths and CJD Mortality Rates by Age Group
Mortality Rates by Age Group and Year of Death
Check out this website which illustrates the mortality statistics well.
http://www.health.state.mn.us/divs/idepc/diseases/cjd/cjdtrends.pdf

Being that there is no treatment or anything for CJD was the most heart-wrenching part of the disease when caring for my dad. We had never heard anything about it, my dad wasn't able to voice what he needed and the doctors gave very little assistance. We were basically on our own and that is not easy to do when your trying to ease the suffering of your loved one.

This disease is rare so they say, but I think it is more common than we know. Being able to have information and resources on how to detect the disease at early stages will definitely help in the process of finding treatment. Please support this search for more answers.

These are the common initial symptoms of CJD?

insomnia (difficulty sleeping),
depression,
confusion,
personality and behavioral changes,
and problems with eyesight, memory, and coordination.

As the disease progresses patients develop rapid dementia followed by involuntary muscle jerking (myoclonus).

In the end stages of the disease, muscle weakness and coordination worsen and patients lose their eyesight and ability to talk.

Prior to death, patients lose all mental and physical functions, leading to coma.

Please check out this website which has a very informative video about CJD.
http://memory.ucsf.edu/cjd. (Thanks Caroline!)

Much love to all,
Lacy

I love biking!!

2008-06-20T17:04:00.000-07:00

Yippeee...I had the day off today!! It was great! After my roommate and I went to some garage sales I hopped on my bike and went crazy!! I felt so good and it was such an awesome day! I biked to Lake Nakomis and around it, then I biked back and headed towards Lake Harriet and decided to go around Lake Calhoun too (Why not?). I think I biked about 20+ miles and I still can walk!! I got home just in time, because as I walked in the door it started to down poor. It was really wierd! Then, I decided that my body needed some stretching so I did some yoga. That was very much needed. I feel a lot more relaxed!! Tomorrow I will take my last rest day and then Sunday I will do my long run of 6 miles. I'm doing good now and I hope I can say the same when my long runs are 10+ miles! Oh goodness! Please keep spreading the word! I so much appreciate your support.
Much love,
Lacy

Who gets CJD and how???

2008-06-19T11:56:00.000-07:00

Creutzfeldt-Jakob Disease affects both men and women worldwide usually between the ages of 50 to 75 years. The officially stated mortality rate is one to two deaths per one million population per year. However, this figure appears to be an understatement as CJD is often misdiagnosed. In one study by Yale University researchers 13% of Alzheimer patients were found upon autopsy to actually have CJD. A similar study performed at the University of Pittsburgh showed over 5% of Alzheimer's patients were CJD victims. There are three forms of CJD: familial (genetic, about 10-15% of cases), sporadic (cause unknown, about 80-85% of cases) and iatrogenic (through a medical procedure such as contaminated cadaver-derived growth hormones (GH), dura mater recipients, use of contaminated surgical instruments, and corneal transplant recipients, about 1% of cases) While it is theoretically possible the infectious agent may be present in blood, there are no documented cases of transmission by blood in humans. Pooled blood products are withdrawn as a precaution when a donor has been confirmed as a CJD victim or they are at a higher risk of contracting CJD. Unfortunately, in most cases blood products have already been utilized by individuals prior to the withdrawals. The CDC is currently under Congressional mandate to monitor blood product recipients for any evidence of increase of CJD incidence.

Source for post today and post yesterday:http://members.aol.com/larmstr853/cjdvoice/facts.htm

Because my dad passed away from CJD I am now restricted for life from giving blood and so are the rest of my immediate family members. My dad did give blood several times so I hope they took his donations off the shelf.

We need to know more!!! Please help!!

-Lacy

CJD? I've never heard of it. What is it????

2008-06-18T14:15:00.000-07:00

Creutzfeldt-Jakob Disease [CJD] may have greater public health consequences than the suspected number of confirmed cases might indicate. CJD is not reportable in most states and is often misdiagnosed or omitted from death certificates. While the infectivity can be reduced, it is extremely difficult to kill these infectious agents. Normal sterilization procedures do not eliminate contamination.

WHAT IS IT????

Creutzfeldt-Jakob disease (CJD) is a rare, degenerative, invariably fatal brain disorder. It affects about one person in every one million people per year worldwide; in the United States there are about 200 cases per year. CJD usually appears in later life and runs a rapid course. Typically, onset of symptoms occurs about age 60, and about 90 percent of patients die within 1 year. In the early stages of disease, patients may have failing memory, behavioral changes, lack of coordination and visual disturbances. As the illness progresses, mental deterioration becomes pronounced and involuntary movements, blindness, weakness of extremities, and coma may occur.

There are THREE MAJOR CATEGORIES of CJD:

In SPORADIC CJD, the disease appears even though the person has no known risk factors for the disease. This is by far the most common type of CJD and accounts for at least 85 percent of cases.

HEREDITARY CJD, the person has a family history of the disease and/or tests positive for a genetic mutation associated with CJD. About 5 to 10 percent of cases of CJD in the United States are hereditary.

In ACQUIRED CJD, the disease is transmitted by exposure to brain or nervous system tissue, usually through certain medical procedures. There is no evidence that CJD is contagious through casual contact with a CJD patient. Since CJD was first described in 1920, fewer than 1 percent of cases have been acquired CJD.

Don't you wish you knew more? Your support would help to make sure more research is performed to find answers to this horrible and mysterious disease. Please help!

Thanks,
Lacy

Keep on Truckin'

2008-06-17T18:05:00.000-07:00

Another beautiful day for a run. I love this weather! Yippee for summer (finally)! I went the opposite direction today and ran from my house to Lake Nakomis. It was a perfect distance because it took me 1/2 hour to get there and then I turned around for home. So I accomplished my second day of training and the hour run went well. However, my back is hurting a little. I have night class tomorrow and Thursday so I will be taking a break from running until Friday. The rest will be great! I still will be updating this blog with some information about CJD so please check back. Also, don't forget to keep spreading the word to all you know about this blog.

"How common is CJD?
CJD occurs worldwide. In the United States approximately one case per one million persons occurs per year. Most individuals in the U.S. who become ill with CJD are between 65 and 80 years of age."

I need your support! Thank you and blessings to all!

Much love,
Lacy

My First Day of Training!

2008-06-16T18:28:00.000-07:00

What a beautiful day for a run! I couldn't have asked for better. It was perfect! My training schedule said that I had to run 4 miles for my first day and that is exactly what I did. It went very well and I actually felt like I was flying. That was probably because I took a break from running last week and instead did a detox and lots of yoga to prepare myself for the rigorous training. It definitely helped! For those of you who don't know I now live in South Minneapolis only about 1 mile from Lake Harriet. Basically, I can walk out my door and I am instantly on the Minnehaha trails....it's great! There were lots of twigs on the path and trees down from the storms this weekend, but all and all it was a beautiful run. I rocked out to Spanish music while I ran and enjoyed the peaceful view of Lake Harriet. Before I knew it I was back at home and still rearing to go for more. Hopefully my run tomorrow goes just as well as it did today. Wish me luck! Tomorrow I have to run for a total of one hour, which for me is about 6 1/2 miles!

I also wanted to let you all know that I visited the TCF bank today and set everything up for my dad's benefit account. Please look to the right under "How to support" to see the updated information. Let me know if you have any questions or concerns. Before I go I just want to share a cool story with all of you. To open up the benefit account I had to deposit $25, which really was no big deal. Just as I was about to get up and leave, the representative handed me a $50 gas card for opening up the account. I was so surprised and so very thankful! God and my dad are so amazing! They are always looking out for me!

Thank you so much to all of you for your continued thoughts, prayers and support. Please don't forget to keep spreading the word about this blog to all that you know.

Peace and love,
Lacy

Thank You for Visiting this Blog!!

2008-06-15T15:13:00.000-07:00

My training officially starts tomorrow (Monday) and I will be posting an update of how the run goes then. I'm sure it will be fine since I've already been running quite a bit and have even ran up to 9 miles at one time!! I think I'm ahead of schedule. I have not yet set up the Larry Hladky CJD Fund account at TCF, but I will be visiting the bank tomorrow to do so. Your support in any way would be greatly appreciated. Please let me know if you have any questions or concerns. Also, please continue pass this blog onto all you know. The more awareness the better!! Thank you so much!Much love and blessings,Lacy