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.