This Tuesday, more than 150 National Fragile X Foundation volunteers representing 27 states traveled to Washington, DC for NFXF Advocacy Day. In 130 meetings, our parents, grandparents, siblings, aunts, uncles, cousins, friends, professionals, and – most important of all – self-advocates, spoke with members of Congress on behalf of the Fragile X community.

Our efforts over the years have resulted in hundreds of millions of dollars for federal programs and research grants, and a large part of our request was to continue that funding for Fragile X. In addition, we asked our members of Congress to:

  • Cosponsor the RISE Act which allows individuals to use existing Individualized Education Program to qualify for special services in post-secondary institutions.
  • Support the SELF DRIVE Act or AV START Act which will establish the potential of self-driving cars for those unable to drive, opening up possibilities of self-sufficiency especially in areas where public transportation is unavailable.
  • Cosponsor the OPEN Act which will help repurpose drugs for rare disease treatment, which is faster, cheaper, and presents fewer risks than traditional drug development.
  • Join the Congressional Fragile X Caucus (House only).
  • Support Medicaid, SSI, and health insurance.

For more information, you can view our Public Policy Priorities (PDF) or help our advocacy efforts at home by joining our STAR Local Advocacy Program.