Don't forget the chiari walk is coming up on September 20th!!!
http://www.conquerchiari.org/walk/CCWalkAcrossAmerica.htm
In addition, there is a bill that was just introduced to Congress. House Resolution 1422: Recognizing and promoting awareness of Chiari malformation and expressing support for designation of a "National Chiari Malformation Month".
If you want to read the full details, go to:
http://www.govtrack.us/congress/billtext.xpd?bill=hr110-1422
I'll try to follow the progress of this bill.