CJD is a disease caused by a misfolding protein, called a prion. (PREE-on) Prion diseases are a group of rare and fatal brain diseases which occur in both humans and animals. In humans, it is known as CJD. Cows get BSE, which stands for bovine spongiform encephalopathy. Deer and elk contract CWD, or chronic wasting disease. There is no cure or clinical diagnosis for CJD. There is no cure for any of the diseases in the prion family.

Monday, July 31, 2006

Your chance of eating a mad cow has increased

With the BSE testing cutback just authorized by Agriculture Secretary Mike Johanns, you have a higher risk than ever of eating a cow infected with BSE, meaning your chance at living a long and healthy life has just increased significantly. Those of us who have witnessed a loved one dying of CJD never thought we were testing enough cows for BSE to begin with. My belief still stands; we should be testing every cow meant for human consumption for BSE.

The Organic Consumers Association is upset about this testing cutback. Far less than one percent of the beef you are eating has been tested for BSE. You could very well be eating diseased meat which means CJD could be incubating in your body right now. Don't you think your tax dollars would be better spent insuring your food is safe from a fatal disease?

So one asks, where can you find beef that can be trusted? Not everyone is going to go vegan or vegetarian to ensure their safety like I have. So what are you to do if you and your family still eat beef? Creekstone Farms wants to test every single one of its cows for BSE but the USDA doesn't want to allow this. Doesn't that make the USDA look pretty guilty of trying to hide a BSE problem in America?

Read about it here.

Tuesday, July 25, 2006

Letter from Florence Kranitz about BSE testing cutback

Dear CJD Foundation Families and Friends:

I hope you are all having a good summer. We, in Ohio, are enjoying beautiful weather, for a change, and hope the sunshine we are experiencing is entering your lives as well.

Many of you (144 to be exact) attended the CJD Foundation’s Fourth Annual Family Conference. Judging by the response of those attending and from the evaluations we have received so far, this was our most successful conference yet.

Right after the Conference on July 10, Ruthie George, Dr. Gambetti, Chris Waldrop from the Consumer Federation of America, Ken Kelly from the Center for Science in the Public Interest and I met with the Secretary of Agriculture, Mike Johanns, his Under Secretary, Dr. Richard Raymond and his Chief Legislative Aide, Beth Johnson. The meeting lasted about 35 minutes. We presented a letter outlining 3 requests, one of which was to test every cow over 30 months of age, to conduct random testing on cows under 20 months and test all animals exhibiting neurological symptoms The USDA representatives were all very attentive. Secretary Johanns indicated that they were considering cutting the BSE testing back from 750,000 to 40,000 head of cattle per year and as the meeting ended we expressed our strong objections to the possible BSE testing cuts.

As most of you know, those cuts were announced last Thursday, July 20. From the upgraded number of 750,000 over the last 18 months (less that .01% of the number of cattle slaughtered for our food supply) to 40,000 per year. The Administration has decided that the cost of continued upgraded testing is not “scientifically justified”.

Needless to say, this decision appears to be based purely on economics. I submitted an Op Ed piece to the Washington Post yesterday. If it isn’t published by Friday, I’ll revise it and send it out as a press release and will also send a copy to you.

In the meantime I am asking all of you to get involved. Unless we, as a group speak loudly, publicly and take action our government will never know there are Americans who are outraged by this decision. We have no vested interest and therefore we must be the group leading the charge.

Those of you who made Capitol Hill visits should call the staff person you met with in each office and register your deep concerns and disappointment, ASAP! Ask where the member stands on this issue and if he/she would be willing to call the USDA, APHIS (Animal Plant Health Inspection Services) and/or FSIS (Food Safety Inspection Services) and the Government Accountability Office to object to this policy change. Follow your call with an email. Please remember, I am only one person but I have the ability, the right and the obligation to strongly and publicly object. I ask you to please do the same.

Thank you.

My best,

Florence

Florence Kranitz,
President
The CJD Foundation

Saturday, July 22, 2006

The E200K Cough

I've met a couple more E200K folks like myself via CJD Voice/friends who attended the CJD Family Conference in DC this month. I'm still struck by the dry, persistent cough seen in E200K patients. My mom had it, and the more I communicate with others who have E200K families, I am finding the cough is extremely common as is the quick death. I know I'm hardly Stanley Prusiner, but I think it's safe to coin a term here -- "The E200K Cough." Show me one E200K patient who didn't display the dry persistent cough in the months and weeks leading up to their death.

Thursday, July 20, 2006

U.S. Scales Back Mad Cow Testing Even Further

The USDA is aboout to scale back testing for BSE because current testing is showing what Agriculture Secretary Mike Johanns says is, "no significant BSE problem," according to CIDRAP.

Instead of testing over 1,000 cattle per day, as has been the practice since June 2004, the USDA will now test a mere 110 per week. I have to stress that you can't find BSE if you're not looking and not only that, but you can't find more atypical strains of BSE if you're not looking.

I was extremely excited when current testing proceudres recently turned up a case of atypical BSE in the U.S. -- every honest finding brings us closer to the breakthrough we are looking for in prion diseases. Not only wil decreased testing sacrifice America's progress in this area, it will also be putting every meat-eating American life at steak...pun intended.

Didn't hear about our atypcial BSE in the U.S.? You need to read the blog more often.

Texas Governor Declares CJD Awareness Week

Check back later for an update on this story.

Saturday, July 15, 2006

Canada announces 7th mad cow

Canada has indeed found it's seventh cow with BSE in what CIDRAP reports is the second finding this month. U.S. Agriculutre Secretary Mike Johanns has sent an American expert to aid in the investitation because this BSE-positive cow was four years old -- therefore born after the feed ban went into effect in 1997.

Kind of makes you wonder how many four-year-old, BSE-positive cows are making it onto dinner plates in America, considering how few cattle are tested here and considering how people like Johanns are banking on the fact that 4-year-old cows aren't supposed to get BSE...

Monday, July 10, 2006

If you were at this weekend's CJD Family Conference in DC,

Feel free to leave comments here! Discuss who you saw and what you learned while there and network with others who went while informing those of us who couldn't make it.

You can always e-mail me: heatlarson AT yahoo.com.

Will Canada Check in with #7?

According to CIDRAP, Canadian officials have announced that they are waiting for test results to confirm whether or not a seventh cow has been found to be carrying BSE. Samples from an Alberta cow are being tested.

For those keeping track, a 15-year-old cow from Manitoba was just discovered to be carrying BSE just six days ago.

So if Canada has found six BSE-positive cows with a possible seventh yet to be determined, why have we only found three American cows with BSE so far? Don't even get me started on the amount of cows Japan has found so far...

A quick search of the Canadian Food Inspection Agency's page says they found three BSE-positve cows in a high-risk population of 60,000. (Obviously, that stat is as of 3-4 cows ago...)

Anyone know how many cows Canadians slaughter for food per year versus how many are tested for BSE? We eat about 75 million cows per year here in the U.S., (last stat I remember seeing on the subject, that number may be higher or lower now). How many are we testing? How many BSE-positve cows are getting through to U.S. dinner tables?

Friday, July 07, 2006

We are closer to a CJD blood test

Imagine being able to detect CJD in a person before they are even displaying symptoms of the disease. Imagine being able to do this to someone like me, whose family carries the E200K gene, and being able to detect CJD in my body before I am even falling ill from it. We just may be a short step closer to making this a reality.

Many have told me early detection may be the key to a patient's survival...in the future, of course, provided we have a treatment plan of some kind to rely upon. In my dream world, we would use the blood test to detect CJD in my body and then we would instate treatment to prevent me from dying from it, whatever that treatment may be. I would be able to bypass the horrible symptoms my mother suffered from such as cerebellar ataxia, incontinence, memory loss, vision loss, inability to walk and inability to swallow, just to name a few.

Another wonderful aspect of a blood test for CJD would be the protection this would offer to our blood supply. If this test becomes standard one day, I wouldn't even be able to estimate the lives it would save all over the world.

Good news about stem cell research from New Scientist

Finally, we can get past bioethical considerations and move stem cell science forward. Ever hear of "virgin birth embryos?" The future of stem cell research is bright and suddenly unoffensive.

Thursday, July 06, 2006

Coming soon -- the first CJDTalk Podcast

I am right now working on the inaugural CJD Talk podcast! The first one will contain the interview I did on KPFT in Houston with Shirley Wilkes-Johnson on Go Vegan Texas. If there's something you want to hear about on the podcast, please let me know. If you're in DC and want to record something for the podcast, you can send me an audio file and I'll put it in the podcast. You can do the same even if you're not in DC, come to think of it. The podcast is for us, the CJD Families all over the world, so I want to make sure it serves everyone the best it can. Please send your suggestions/stories/tips/audio files to heatlarson AT yahoo.com.

Wednesday, July 05, 2006

Canada reports mad cow #6

Canada has confirmed a sixth cow with BSE, this one reported to be over 12 years old. This cow was from Manitoba.

I will not be in DC this week

I am not traveling to DC this week for the CJD Family Conference. I'm staying in Phoenix because I'm only working part time right now, so a trip to DC is out of the question. I'm a bit sad I'm missing the conference because I really wanted to go this year to meet everyone, especially since people are traveling from so far away! Next year, I promise I'll make it out there somehow.

If you are going to the conference, feel free to send me updates for the blog! Send e-mail to heatlarsonATyahoo.com.

Sunday, July 02, 2006

Oops, we undershot the vCJD risk

According to CIDRAP, the current estimate of how many will die of vCJD may just be too low. Honestly, I know a legion of people who could have told you that. A study in the Lancet by Collinge et al reports that the incubation period of Kuru could be several decades long and that this could very well be the case for vCJD too. In other words, we may have seen only the beginning of the death toll vCJD will cause.

A stat such as this isn't very encouraging:

"The authors state that because of the genetic basis for vCJD susceptibility, the cases identified so far may represent people who are genetically predisposed to have the shortest incubation period."

We can't prevent these deaths at this point because whoever is going to die of vCJD has already eaten tainted meat and been exposed to the infectious agent and therefore the disease is already incubating. The only solution that I see is to work as hard as we can towards treatment of prion diseases and a possible cure. I can't believe anything other than we will get there.

Possibly, we've only seen the first wave of vCJD victims.