Why I support stem cell research

I support stem cell research in case CJD happens to me someday, and even if it doesn't. Stem cells may one day be a valid form of therapy for those suffering from CJD. Prions eat holes in the brain, so how do you regenerate the parts of the brain that were lost to CJD? Stem cells could be an answer. Actually, it looks like a NINDS scientist is already making brain cells regenerate. Check it out!

The EuroCJD Experience

The little angel looking over my shoulder has sent me a copy of The EuroCJD Experience, a study about the E200K mutation of CJD, the mutation my mother's family carries. (It's on her paternal side; I have yet to be tested). Though I haven't sat down to read the study in its entirety, I skimmed already to get some highlights:

"A total of 10-15% of human transmissible spongiform encephalopathies (TSEs) or prion diseases are characterized by disease-specific mutations in the prion protein gene (PNRP)." I thought it was less than that, in other words, I thought it was under ten percent. I thought those affected by the genetic mutation were a rarity. Seriously, I was under the impression that fCJD happened around 5% of the time).

Knowing your mutation, according to the study, may be able to give you a fighting chance at some point -- provided someone comes up with a form of treatment enhanced by early detection. So as I've always believed, knowing whether I am positive or not will come in handy someday. But someday isn't here yet. We don't have a solid method of treatment for CJD. But as soon as one becomes available, sure, take my blood and test it. But not before then.

Here's some food for thought: Perhaps this future form of treatment is PPS, or Pentosan Polysulphate. I have been hearing rumblings in the CJD community about how it is helping Jonathan Simms in the UK. Say I go get my genetic testing done and find out I am positive for the E200K genetic mutation as my mother was. I am 26 now; my mother was 56 the day she died. According to the Canadian study below, a dry cough is a pretty strong indicator that CJD has been triggered in an E200K patient. My mother had the dry cough in the months prior to the obvious onset of her CJD symptoms. So will I be able to begin PPS treatment once I display the symptom of a dry, persistent cough? The cough shows up months before death, will that be enough time to save my life with PPS? Trust me, I long to bear the weight of survivor’s guilt when I’m 60, 70, 80, 90 years old!

One More Thing About the Atypical BSE Strain in America

The most important thing to realize about this new finding of an atypical strain of BSE in America is that this wouldn’t have been found without testing animals for the disease. Imagine the power that researchers would have if every animal in America were tested for BSE! We would have all the information needed to help stop this disease at our fingertips. We would know how many cattle in the U.S. are carrying BSE and we would also know what strain they are affected by. This kind of information would help illustrate how the disease is mutating and how animals are getting infected by BSE. Hiding the BSE problem in the U.S. by refusing to test every animal meant for human consumption is helping no one. We can’t fix the problem until we know how widespread it is. Here is the link once more to the article about the new atypical BSE strain that has been found in the U.S.

heatlarson@yahoo.com

A unique conflict of interest to torment my soul

Just to show you how far-reaching the beef industry's promotions are (and their budget), I am now running commercials for "American Beef" during my show on 98.7 The Peak. How irritating is this for me as someone who fights for safe beef in America and for a cure for CJD? I fight for public awareness of this disease and will with my last breath, whenever that may be.

And I go to work to play beef commercials. Each beef commercial should be followed by a CJD Foundation commercial, or a Concerned Consumers of America (if there is such an organization) commercial. Each beef commercial should be followed by something that says "Oh, and by the way, we don't test every animal for mad cow disease. So eat our beef, but it could kill you if you eat it. We don't care about your health; we just care about getting richer, we don't care at whose expense, or how many lives have to be lost."

Even more ironic, I'm scheduled to read a United Blood Services PSA right out of the American Beef spot. How funny is that? Donate blood, unless someone in your family died of CJD, which is what happened in mine and I can't donate blood at all. Ever. But I also know our CJD is genetic. Thank God I never donated blood.

Also irritating is having to give away a prize for Outback Steakhouse. I didn't do that. I left it for Monica to give away after my show was over. I cannot possibly ever promote something that I know can kill someone. There is no guarantee American Beef or Outhouse Steakhouse beef is safe. So why give it to someone? I may as well be running Marlboro commercials and giving away Camel cigarettes. That's how responsible this steak crap is.

Guess what else? My station charges big bucks for these adds, so American Beef is a big spender. We're the #1 rated radio staition in Phoenix with the highest revenue. No wonder American Beef wants a piece of us.

My interview from today's Go Vegan Texas

Today's interview with Shirley Wilkes-Johnson on Go Vegan Texas went well. I'm grateful for any and every opportunity I get to educate the public about CJD and mad cow disease. Here's a link to the KPFT archives so you can listen if you missed the show:

Go Vegan Texas

Heather Larson on Go Vegan Texas Monday June 12

I'll be LIVE on Go Vegan Texas from 8-8:30 am PST in Houston. You can listen live here:

http://www.govegantexas.org/index.php

Just click on the cow's ears (bottom left corner of the page).

I'll be plugging the current issues of Veg News Magazine because I'm on Page 96 (back page) talking about "How I Went Veg."

I'll also be plugging this blog.

I'll be talking about two issues close to my heart -- the danger of mad cow disease in America and Creutzfeldt-Jakob Disease, which killed my mother at age 56 in 2004.

Variant CJD can be contracted by eating contaminated meat and the US only tests one tenth of one percent of the cows meant for human consumption in this country. Please understand the risk Americans face each day just to eat a piece of beef.

And that, among other reasons, is why I'm VEGAN!

Viva la Veg News: http://www.myspace.com/Veg News Magazine

heatlarson@yahoo.com

Fascinating E200K News

I think this new study from the Canadian Journal of Neurological studies is pretty interesting. When my mom was dying of CJD, a dry cough she had drove me nuts. My mom actually exhibited the cough for months before the cognitive and physical symptoms of her CJD, like cerebellar ataxia and myoclonus, showed up. My mother coughed almost non-stop sometimes. I'd get on her case about it but she'd just dismiss it as allergies. Being around someone who coughed like this was rough; it was irritating and easily got on my nerves and my father's too.

I forgot about the cough because it paled in comparison to other CJD symptons like incontinence, aphasia, ataxia, myclonus, loss of eyesight and inability to walk. I was reminded of it again by Tracy K. at the CJD Foundation when she was filling out my questionaire. Tracy told me around 10-15% of patients experienced this persistent dry cough as a symptom of CJD. (Tracy, correct me if I'm wrong).

The CJN study talks about a mother and son who suffered the 200K mutation of CJD, 20 years apart, and both exhibited the same persistent dry cough. My mother's mutation was E200K, 129M.

So does this then mean that the persistent dry cough is a hallmark of the 200K gene mutation?

Here's a link to the study:

http://cjns.metapress.com/