Advocacy is key to support the mission of the NFXF — to serve the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved.
Essential to advocacy success is the participation of parents, siblings, self-advocates, friends, medical providers, and researchers from the Fragile X community. Members of Congress listen to voices from home. They are the loudest, most effective voices and it is critical that you attend meetings with members of Congress and their staff. You don’t have to be eloquent or perfect — you just have to be honest, respectful, and solution-oriented. Your participation moves the needle for more research funding and policies that help families impacted by Fragile X have a better life.
New to advocacy? Need a refresher on the terminology? Our partner, the Everylife Foundation, has a comprehensive glossary of policy and advocacy terms you can use.