Have you been to the www.ctf.org/ web site?  There are other chat rooms on line, but this one is terrific.  They have not only chat rooms and discussion boards; they have just about everything you could possibly imagine.   Some of the tabs like CTF Supporters, Patient Information, Research, and so many others, offer you the tools to help you cope with this challenge.  They have ways for people to donate in the very real hope of finding a cure, and they instruct people in finding doctors, financial aid and local support groups.  There is a section for children to use, called Youth Connect, and information about the camp that they can attend.  It is an amazing site.  The latest research is posted there, as well as informational handbooks and a newsletter.  They have state by state activity lists.  This may be a great place to begin to find whatever you need. There is another site too that may be a source of comfort and information.  It is www.ctf.org/chat/RP.htm/ .