Better late than.....

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!!!!

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

Happy Birthday Dad!!

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...

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...

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....

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

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

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....

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!!

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.....

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...

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!

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!

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!!

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...

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!!

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 :(

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...

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...

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!!!

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....

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.....

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...

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...

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!

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....

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