Hey, Beth.
I just wrote Angela about this. Check out these sites:
www.wacma.com
www.ASAP.org
www.chiarione.org
www.conquerchiari.org
Also,
make sure to find a good, experienced neurosurgeon so you'll know whether you're a surgery candidate or not. A neurologist will be of no help whatsoever.
Good luck!
LIZARD