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Agenda and Accomplishments

Advocacy Agenda

Our funding requests to members of Congress on Advocacy Day Capitol Hill visits change each year depending upon the political climate and budgetary considerations. Our “asks” typically include:

  • Requests for maintaining or increasing current levels of funding for Fragile X (FX) programs at CDC, NIH & DOD (see below).
  • Requests for the member of Congress to join the FX Caucus.
  • Support for relevant specific Bills (Ex. ABLE-asset development; TEAM-Education, Transition, Employment; Seclusion and Restraint; IDEA, etc).

The Collaboration to Promote Self Determination

The Collaboration to Promote Self-Determination (CPSD) advocacy movement is an informal network of nearly 20 national organizations that have come together to promote opportunities for those with intellectual disabilities. The National Fragile X Foundation is part of this network, and we invite you to learn more about the Collaboration to Promote Self-Determination.

History & Accomplishments

Since 2000 the NFXF Public Policy 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.

Together, these programs represent nearly $11 million in new investment by the federal government in FX research and programming.

With the NFXF’s urging, strong congressional directives resulted in the National Institutes of Health nearly doubling its yearly investment — from $15 million to nearly $29 million — in basic science and translational research aimed specifically at bringing targeted treatments for FX to market.

DOD – In the first year FX was included in the DOD’s Peer Reviewed Medical Research Program over $3 million in FX research was funded. FX will again be funded in 2011 and our advocates will continue to work to assure that this funding continues in 2012 and beyond.