What is Fragile X advocacy and how can I get involved?

The NFXF leads an advocacy program to advance research funding for Fragile X, policies that facilitate drug and treatment development,  and programs to provide better lives and opportunities for individuals living with Fragile X and other intellectual and developmental disabilities.

Essential to advocacy success is the participation of Fragile X parents, siblings, self-advocates, friends, medical providers, and researchers. 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 need for more research funding and policies that help Fragile X families have a better life.

The pillar of the program is Advocacy Day. Every spring, for over 20 years, we gather in Washington, D.C., in a concerted, joint effort to raise awareness of Fragile X in Congress and to ask for research funding and policies that provide the opportunity for a better life for those living with Fragile X.

Learn more here.