Cure CJD

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

I hate Mother’s Day

Mother’s Day reminds me my mother is dead, that she died too young, and that there is still no cure for CJD.  It reminds me there’s still no clinical diagnosis, so patients like my mother still may not know what hit them.  Mother’s Day reminds me we have far to go and much to learn about CJD.  My heart goes out to all of you who have lost a loved one to CJD  —  especially a mother.  Mothers are the cornerstones of families, the bond, the very glue that holds us together.  A mother never gives up on her children.  We owe it to the mothers we’ve lost to never give up on them.  Every CJD patient deserves better than my mother got.  I don’t know the answers.  I wish I did.  But I think we can find them together as long as we keep communicating.  Here’s to another year of fighting on.  Rest in peace, Mom.


May 10, 2010 - Posted by | Uncategorized


  1. This is my fifth Mothers’ Day without my own mom, who you know I also lost to CJD. While it is still a painful reminder for me as well, I have my own daughter with who I can share this day with. I just hope that someday very soon, there will be a cure for this devasting, mysterious disease.

    Comment by Lisa Mischel | May 10, 2010

  2. I just read your postings, up to a week ago, I had heard of this terrible disease without paying much mind to it. My dearest friend of 51 just got diagnosed and confirmed by three different doctors in the state that she indeed has CJD. Within a month and 1/2 perhaps a tat more, she has gone from a vibrant and jolly person to a helpless person.
    She was sent home with the devastating news and is now in the care of her children. She is now in a wheelchair and struggles to communicate. She is still cognative to some degree. My question to you is, as a friend, how can I help?

    Comment by Sylvia Quinn | May 14, 2010

  3. Sylvia, Please read Heather’s post -Making a Difference takes facts – for March and my answer to her.
    You can email me if you have any questions.

    Comment by Elaine Schofield | May 16, 2010

  4. I think you put that perfectly. I lost my only parent, my beautiful mother on May 17,2008. I was 23 at the time. There is not much known about CJD. Had there been I could of known 3 months earlier and would have spent more time with her. I hope more physicians are aware of this cruel disease and pray they find a cure soon.

    Comment by Elizabeth | June 26, 2010

  5. Elizabeth, you said it perfectly as well; if we’d all known more about the disease, we would have been afforded a more respectable goodbye with our loved ones. That’s what I want people to understand most about the disease. My mother died so quickly (a month after we took her to the ER). We spent precious final days of her life trying desperately to diagnose and help her, not knowing for three weeks that she had a terminal illness and couldn’t be helped.

    Comment by CureCJD_Heather Larson | June 26, 2010

  6. Hi! We are from Brazil . My mother was diagnosed of CJD in 2007 by the UCLA – San Francisco – they gave to her a year of life. We are in 2010 and she still alive, of course with all of the problems that a patiente with CJD, or other kind of dementia has. After the cjd diagnostic, she had some others diagnostics, like Alsheimer, Front Temporal Dementia, and some others. This area of medicine is 50 years bellow the others areas. The doctors just don’t know what is the real diagnostic and thats it. Unfortunatelly we don’t see any future to save my mothers life. This is a very difficult situation for all of our family.


    Luiz Gustavo

    Comment by Luiz Gustavo | October 20, 2010

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