Meet Evan, he has a #RareDisease Polymicrogyria (PMG), and his Mom, Tara, is a Rockstar Advocate!
I met Tara at the Global Genes Summit in sunny California last month. We met in the elevator when we first arrived at the hotel. She seemed pretty nice, we exchanged pleasantries, found out we were both there for the summit, she was there as a parent advocate and I was there as a patient advocate. We headed off to our rooms. We met again the following day at one of the breakout sessions at the end of day 1 and started chatting about one another's lives, kids, why we were the