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FARAFARA Cure FA
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ACARM

 

The All California Ataxia Research Meeting was killer! We heard about cutting edge Ataxia research from some of the top minds in the world including the always wonderful Susan Perlman. Dr. Perlman is great, she sees hundreds of patients and still takes the time to come over and ask me how my knee is doing.

We heard from a Scientist who works with Joel Gottesfeld at Scripps. These guys may be on their way to figuring out a way to reverse the effects of Friedreich's Ataxia and we can help them by donating our dollars to organizations like FARA (Friedreich's Ataxia Research Alliance) and NAF (National Ataxia Foundation) who fund this research.

All of these scientists speak a foreign language. A language of fatty acids, messenger RNA, HDAC inhibitors, GAA repeats and polyglutamine phosphotase. They often try to make analogies; today, one of the presenters, a brilliant scientist Dr. Guy Miller was explaining the role of COQ10 and he told a story about Lance Armstrong, toasters, and tetherball...what the heck? Most of us have no idea what these guys and gals are talking about but all of us are greatful that they know what they are talking about and we are amazed at their understanding of the processes that take place in the human body.

One of the great people I met for the first time is a guy named Mike Parent who is the Executive Director of NAF. Mike is very supportive of my ride and with his help and the support of NAF, we will try to make this thing huge.

Paul, Me, and Mike

Additionally and maybe more importantly, I saw some old friends including Phillip Bennett and his family, Paul and Brianne Konantz (if thats how you spell it) and Norm Simpson (who flew in from the east coast). I also met a few people that I have been trading emails with for a while, Vikki and John Hartigan and Dori McCandless, these folks are from the Sacramento area and I hope to get together with them in the future.

The All California meeting was great and I can't wait until the National Conference in Memphis!

PS-I promise the next post will be about cycling, I plan to get on the trike this week...

 

 



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Kyle Bryant

Kyle Bryant

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