Advocacy

At the National Fragile X Foundation we recognize the critical role the federal government plays in funding scientific research and in establishing service related programs for individuals and families coping with Fragile X-associated Disorders. In response we have established a comprehensive public policy and legislative advocacy program to secure greater funding for FX research and programming. The first annual Washington, DC National Fragile X Advocacy Day was held in 2004 and continues to attract hundreds of volunteer advocates representing nearly every state each year.

We recently hosted the 8th annual Advocacy Day (2011) where nearly 150 advocates from 40 states marched 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 will work 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, DC 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, DC 20515
(202) 225-2464
cristina.batt@mail.house.gov