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.

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.