Laurie
Eeek! I'm sad you see it as "window dressing" for ALS TDI. The goal to add more people with ALS into the meeting AND to get them to express their voice after the meeting. The Selection Committee will work with Fellows not only to get access at the meeting, but importantly to help Fellows get their voice and impressions out there during and after the symposium. A group of private donors sent money to ALS TDI who will use that money to pay for registration and accommodation and food for Fellows...that's our only role in it. Fellows dont have to be affiliated with ALS TDI in any way otherwise - heck, they can entirely disagree with ALS TDI on everything we do...that's fine! The point is about increasing patient voice. That's it. I should note that the Chairman of MND Iceland and the Chairman of ALSA National are on the Selection committee, as well as a Board Member of Team Gleason and Answer ALS, and a VP from PatientsLikeMe. There are three people with ALS on the Selection Committee, one former care provider to a person with ALS, and one current care provider to a person with ALS. I am the only person on the committee that either doesn't have ALS themselves or has or is caring for a person with ALS. I could remove myself from the Selection Committee altogether I guess, but since I personally believe in the goals of the Fellows Program, I'd like to see it through for this first year at least...then, I'm happy to step away entirely.
Rob