Advocacy

On National Fragile X Foundation Advocacy Day (NFXFAD), held every March, members of the Fragile X community march to Capitol Hill to relate their stories about Fragile X-associated Disorders, their families, and the need for increased funding for National Institutes of Health (NIH) and Department of Defense (DOD) research, for the FX public health program at the Centers for Disease Control (CDC) and for the Fragile X Clinical and Research Consortium.

Please add your voice to our efforts!

Additional Information

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; and
  • 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 in the 113th Congress are:

Rep. Gregg Harper (MS-03)

Scot Malvaney
Policy Director
307 Cannon House Office Building
Washington, D.C. 20515
202-225-5031
scot.malvaney@mail.house.gov

Rep. Eliot Engel (NY-17)

Cristina Batt
Senior Policy Advisor
2161 Rayburn House Office Building
Washington, D.C. 20515
202-225-2464
cristina.batt@mail.house.gov