In the first week of March I attended my first Fragile X Advocacy Day, organized by the NFXF, to meet with many of the Massachusetts delegation to Congress, and I wanted to give my takeaways from the experience. While this was my first time advocating for fragile X research, I’ve been a longtime lung cancer research advocate and have met with many of the same representatives in the past. Advocacy Day was well organized and we had an awesome team of advocates representing Massachusetts (including Mike Pierce, Ed Hanrahan, Denise Devine, Kelly Devine, Melissa Welin, her son Caleb and niece Kathryn).
It was a pleasure to meet with many of the families that were in attendance and to meet the leadership of NFXF. My participation in Advocacy Day was in the spirit of “we are all in this together”. Here are my takeaways.