Cure CJD

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

Dr. Appleby’s Blog

One of my fellow CJD friends on Facebook just pointed out Dr. Brian Appleby in Baltimore has a blog:

http://cjdblogger.blogspot.com/

He’s also on Twitter @CJDBlogger and @bsappleby.

Yes, the blog mentions the CJD conference and has some actual data on presymptomatic genetic testing. I didn’t realize anyone had such data! Cool.

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July 24, 2009 - Posted by | Uncategorized

3 Comments »

  1. My wife, age 56, was diagnosed with CJD in November. She is still reasonably lucid and mobile but it looks bad. I have not searched all of your posts but is there experience in the community with Flupirtine beyond the 2003 study?

    Comment by Tom Wells | December 10, 2009

  2. I am not sure; I am not familiar with Flupertine. I just looked up some info on it here:

    http://www.cjdsupport.net/UserFiles/File/newsletters/CJD_newsletter_jan%2002.pdf

    I can tell you anything is worth a try at this point as so little is known about how to make a patient more comfortable. I was very much in the dark about it when my mom was dying. In our family, the mutation kills so quickly, I doubt flupertine would be of much use for us. But I think for those who suffer from a much longer course of the disease may benefit.

    Comment by CureCJD_Heather Larson | December 10, 2009

  3. Side note: The link to that newsletter I posted above comes from 2002. I’m not sure what the current research on the drug is, but if someone would like to comment who has some personal experience with flupertine, please do.

    Comment by CureCJD_Heather Larson | December 10, 2009


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