I have joined some facebook groups like Chiari Kids and Chiari Friends in Oklahoma. Also there is a really big group on yahoo called The World of ACM Association Support Group and if you join that one you'll also want to join the WACAM Parents yahoo group as well.
There is a lot of knowledge out there about Chiari....it just isn't in the same place! Some of it is from doctors and books but most of it is the parents and people living with it every day. Real life knowledge is the best. I personally didn't go into the groups looking for friends (maybe I have Asperger's too). I joined because I am a researcher at heart. I love having a problem and conquering the problem if I can. I do believe if it isn't right down the street it's at my fingertips on the keyboard of the big wide web out there. I also believe that I will be traveling to see a specialist for this for my children hundreds if not over a thousand miles away!
Other good sites are:
http://asap.org/index.php/disorders/chiari-malformation/
http://www.conquerchiari.org/index.html
http://csfinfo.org/
I'm sure others will come along at some point and post their favorite support groups for CM out there. Please do - knowledge is power!
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