Crowsister - Hope your appointment goes well tomorrow, will you let us know? A support group that doesn't support patients can't really be called a support group, can it? :-)
Sorry about the links that didn't work, but am glad that you found some new resources and I hope you hear from those you wrote. It's a tedious process sometimes but it's critical in order to advocate for yourself.
We're happy to help, and looking forward to your report on your visit with Dr. Gee.