Blessings from afar...

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!

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?

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...)

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!!

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!!

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!!

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!!

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'

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????

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....:(

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!

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

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!!

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...

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!!!

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!!

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!

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!!

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

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...

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

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!

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!!

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!!

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!

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