Cure CJD

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

A new time has come

There is a clinical trial in the works for a preventative drug for prion diseases. It’s five years away.

Clearly there is more to this story, much more to process, and I’ve been processing this for a few days now. Clearly there is news to share.

I was on a conference call the other night hosted by the CJD Foundation — the audio of it is posted now on the CJD Foundation website here. (If you were on the call, please comment with your thoughts).

I honestly can’t say I’ve even visited the Foundation’s website in years. For some time, I didn’t know what they had to offer us — we, the victims of prion disease (genetic or not). I gave up. But I am pleased to see a revamp of the site in line with a revamp of the staff.

Of course, technology is also much better than it was 13 years ago… See the “Interviews with Experts” page now! (Seriously, when this mess began in my life in 2004, we had a Yahoo group).

I have much more to say and do about all this. This new development is one I didn’t think I’d see yet. Honestly, I didn’t think we’d get to this point in only 13 years.

Please understand the above-linked call with Sonia & Eric is a watershed moment for me. For us. For all of us.

Happy processing to all of us. These are exciting times!

~Heather Larson, E200K Family Member

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April 9, 2018 - Posted by | Uncategorized

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