Cure CJD

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

I am still an optimist.

I still believe there is a cure for CJD. I still believe a cure will be found in my lifetime.

And please don’t leave a comment on this post if you’re one of Those People who claim they’ve already been cured or know what the cure is. Believe me, if that were true, every neurologist in the world from Prusiner to Gambetti would be breathing down your neck, anxious to tie you down like a lab rat. Seeing as you’re free to comment on this blog still, well…we know that’s not true. Not to mention that the world’s biggest pharmaceutical companies would also be fighting over who gets a piece of your brilliance.

So to loyal visitors of the blog, that’s why I ignore certain comments left here that are far less than classy. And if you’re one of those uneducated idiots who want to leave one of those “but I’m cured!” comments today, please don’t. And if you think some basic mineral cured a prion-like disease in your dog, or cat, or cow or goat — you can shove off too. Have some class and go start your own blog where you can post your comments.

Because today is an important day in my life and I don’t want to hear it. Today, it’s been two years since my cousins lost their father. It’s been almost six years since my mother died. This is unacceptable. CJD means only one thing: loss. Even the Simms family in the UK has suffered a great loss, though some will argue their son, Jonathan, is still alive. (He was, last I checked, but I can’t find a news article dated 2010 to confirm this).  Anyone who has seen a body overtaken by CJD knows that the person within it is immediately lost, their quality of life immediately taken from them.

But it doesn’t have to be this way.  We can still hope that a vaccine is right around the corner, or something that can stop the infectious prion from proliferating.  Give us a pill, an injectable drug, a preventative measure.  I’d meditate every day like a Buddhist monk if you told me if could improve my chances.  I’d do anything to not die the death my mother did.  I’d do anything for this not to happen to another family like it did to mine.  So to the researchers who read this blog, thank you for your hard work at attempting to better understand and cure this disease.  Your work matters.  It is appreciated.  We need you and we need your dedication.  Let me know how I can help.

@heatherlarson

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June 1, 2010 - Posted by | Uncategorized

6 Comments »

  1. Hi Heather! I agree…we all want a cure but we don’t want someone giving anyone “false hope”! I will continue to help find a cure! God bless you and your family!
    Sharon

    Comment by sharon | June 1, 2010

  2. Thanks, Sharon! I agree; and some of the past comments left here have been downright harassment. I’m glad people have been respectful today. =)

    Comment by CureCJD_Heather Larson | June 2, 2010

  3. Yes, Heather, I went back to look at the past blogs and I was aware of Ainee, because she had written to me when my sister was diagnosed with cjd…telling me to quickly get ahold of the doctors to give her this so-called remedy. I just wanted to say that my sister was getting Vit.B12 shots before they figured out what her diagnosis was, obviously, it wasn’t the B12 deficiency, as they had thought. B12 shots do help for a B12 deficiency and I know people that have been helped by that…but that’s it. cjd is in a whole different category and there has not been anything to “cure it yet”. My sister was diagnosed on March 23 and passed away on April 9. No one can possibly understand how horrible this is to go thru, with their loved one, unless you have experienced it yourself. It was devastating to all of us and the doctors and medical community at Mayo Clinic in Rochester, MN, as well as other medical facilities, around the world, would have been the first to treat it, if there was a cure. The medical team that my sister had at Mayo Clinic were very compassionate and caring….if there was a cure they would have provided it. We will keep helping to find a cure for “cjd”! As our “Dear Friend Eric, says, I will no longer give cjd the honor of having a “PROPER NAME” so it will be in small letters when I put it in writing. All that are fighting this disease or have had a loved one with this disease…may you know that you are in my thoughts and prayers daily!

    Comment by sharon | June 2, 2010

  4. My email address is chermears@yahoo.com
    sharon

    Comment by sharon | June 2, 2010

  5. Love you Heather. Sorry I’m 2 months late reading this. There were some new young researchers at the conference last month. I am more hopeful each year.

    Comment by Hatte | August 3, 2010

  6. There has to be a cure …..please!!!!!!!!!!!!!!

    Comment by Anna | February 5, 2011


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