On National Fragile X Foundation Advocacy Day, held every March, members of the Fragile X community descend on Capitol Hill to relate their stories about Fragile X-associated Disorders, their families, and policies that support Fragile X families, such as health insurance, research at the NIH and DOD, research and public health programs at CDC, ABLE accounts for savings, facilitating the use of potential new drugs for treatments and a cure, and other items.
Overall, the goal of the NFXF is to be a voice of solutions, working across party lines, to improve the lives and opportunities of people living with Fragile X.
Currently, the NFXF is advocating for:
- Cosponsor the RISE Act (H.R. 2782 and S. 1295).
Allows individuals to use existing Individualized Education Program (IEPs) to qualify for special services in post-secondary institutions.
- Maintaining or increasing current levels of funding for Fragile X programs at CDC, NIH and the DOD.
- Support the SELF DRIVE Act (H.R. 3388) or AV START Act (S. 1885). Establishes the potential to use self-driving cars for those who are not able to drive, if the technology is deemed safe by the federal government. The House passed H.R. 3388 to authorize the federal government to research and promulgate regulations.
- Cosponsor the OPEN Act to open the possibility of “orphan” drugs to be used for Fragile X treatments and a cure.
- Improving Medicaid, SSI, SSDI, and health insurance availability for people living with Fragile X and other disabilities.
- Join the Fragile X Caucus.
The NFXF advocacy efforts have established:
- An annual Advocacy Day in Washington, DC.
- A national Fragile X Public Health Program at the Centers for Disease Control’s National Center on Birth Defects and Developmental Disabilities (CDC).
- Fragile X research funding by the Department of Defense (DOD).
- A comprehensive National Institutes of Health (NIH) Blueprint to guide research targeting all Fragile X-associated Disorders.
- The establishment of ABLE Accounts, which are tax-deferred savings accounts for adults living with disabilities, similar to 529 college savings accounts.
Congressional Fragile X Caucus
Mission: The Congressional Fragile X Caucus will increase awareness of the public and private efforts underway to treat patients and develop therapies, and will identify ways Congress and federal departments can better serve families impacted by FX.
Goals: The caucus will promote public policies to enhance the quality of life of individuals with Fragile X by:
- Supporting an increased investment in federal resources for FX research and public health initiatives, as well as greater coordination and resource sharing to maximize this investment.
- Eliminating barriers to economic opportunity in employment and in programs that promote savings and investment.
- Raising expectations and improving outcomes in education.
The Congressional Fragile X Caucus strives to make a positive difference in the lives of families struggling with a Fragile X-associated Disorder and works closely with the National Fragile X Foundation.
The Co-Chairs of the Fragile X Caucus are:
Rep. Gregg Harper (MS-03)
307 Cannon House Office Building
Washington, DC 20515
Rep. Eliot Engel (NY-17)
Senior Policy Advisor
2161 Rayburn House Office Building
Washington, DC 20515