Cure CJD

Heather Larson's experiences in helping find the cure for CJD

Finally, a break in the case!

I’m pretty excited  —  at least in the way that geeks (like me) get excited.  I’ve Googled for family members many times since 2004, when my mom died of CJD.  She has so many relatives…but I never found very many.  Every time I thought I had a lead, I didn’t.  Today I think I may have found an actual relative and sent that person an email.

I would really love to be able to construct a picture of how many relatives have died of CJD.  Nobody has ever told me there is a pattern as to how the E200K genetic marker passes through a family tree.  I am not sure if anyone even knows how it works or if any family has ever researched their family tree to see who died of what  —  and at what age.

All I’ve been told so far is that you have a 50/50 chance of having the genetic marker.  If you have it, you will develop CJD.  But I am not sure if I believe that.  My mother and her brother are both dead, but their father who passed the gene down to them is still alive.  His brother died at a much younger age than he is now.  Conventional wisdom says that my paternal grandfather should have developed CJD and died by now.  But he has not.  So what is the secret to his long life?  Doesn’t it sound to you like he’s the missing link?

Maybe tracing my ancestry can tell me something.  Maybe not.  Nonetheless, I’m inspired to give it a shot.  I’ve been watching the CBS show “Who Do You Think You Are?” lately and it’s been good inspiration.  While it may not cure CJD, I’m sure it can teach me something. I found an old photo of my mother’s grandparents today.  I didn’t know their names before.  Now that I do, I really want to learn more about them and how they died.


March 27, 2010 - Posted by | Uncategorized


  1. Hey Heather, I haven been fallowing your blog sense my father was diagnose with CJD. He passed away last week. I’m sure you understand the lose that we are all going threw. My aunt died three years ago from this. My grandma is 86 and my grandpa died at 87. I believe if you have the gene you have a 50% chance of it coming out. We are waiting on my dads blood work to tell us if he was a carrier of the genetic mutation. Keep writing it helps.

    Comment by Kristi | April 15, 2010

  2. I have been doing genealogy for a year as a hobby and have learned a lot of tricks of the trade — sites to go to, how to look, the ways names vary, etc. Let me know if you want to email back and forth on looking for relatives.

    Comment by Hatte | August 3, 2010

  3. Heather, I haven’t seen a post from you for some time now. Are you still active on this blog? I look forward to your reply. Thanks.

    Comment by Paul | August 26, 2014

  4. Hi Paul,

    I haven’t been active on here in a long time. I rarely receive comments now since I’ve made it clear that I do not know of or promise a cure at present time. It was getting too heartbreaking receiving emails from people who thought I might give them some hope or solution.


    Comment by CureCJD_Heather Larson | August 26, 2014

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