Cure CJD

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

Didn’t make the CJD Family Conference

I have never been to the conference, actually. I’d really rather not burn all my vacation time on the trip, which is a pretty hefty trek in both time and money from Phoenix. If I have time and money for only one major trip a year, it’s going to be a cruise. No offense. This is one of those life-is-short things I do. This is what it’s like when fCJD runs in your family. Time is really important and decisions on how to spend it can be tough. My dad isn’t interested in going with me; he has moved on. Or very likely doesn’t want to face his only child’s 50/50 shot at early mortality. Bringing back memories of his first wife’s death isn’t exactly his favorite pasttime, though once in a great while he’ll vent about what we went through with my mom in 2004.

So that’s the long-story about why I wasn’t there this month and why I’ve never been yet.

I know some folks who went. I believe they even wrote some blogs about it or planned to. I’d like to post links to their work here. If you were there and were reading this, please comment below and direct us to your site. I’d love to make an entire page of links from those who did attend this year’s conference.

If you went to the conference, please start a blog about it. Put up a web page. The more of us there are on the internet with blogs, websites, and Twitter accounts talking about CJD, the less this becomes a rare, hidden, or hush-hush thing. It helps us raise awareness and end stigmas. It helps us to be heard so we don’t have to hear b.s. statistics or slang used in describing this disease. It helps us to show that we are concerned about treatment, drugs, diagnostic tests, contamination, and a CURE.

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July 24, 2009 - Posted by | Uncategorized

3 Comments »

  1. Heather,

    I found your web site for the first time today. I also lost my Mom to the E200K CJD mutation. I got tested after my Moms onset and found out I also carry the mutation. That was over 10 years ago. I would love to communicate with you please e-mail me when you have time.

    Thanks
    Robert

    Comment by Robert | December 29, 2009

  2. Glad you found me. We should definitely email. Would love to hear more about your story. I always wonder how many of us E200K people there are.

    Heather

    Comment by CureCJD_Heather Larson | January 2, 2010

  3. I don’t see an email address or profile for you on WordPress though…you can feel free to email me at hotwords [at] mac [dot] com

    Comment by CureCJD_Heather Larson | January 2, 2010


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