Advocate For Fragile X Families

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.

Agenda

Currently, the NFXF is advocating for:

  • Improving Medicaid, SSI, SSDI, and health insurance availability for people living with Fragile X and other disabilities.
  • Maintaining or increasing current levels of funding for Fragile X programs at CDC, NIH and the DOD.
  • Join the Fragile X Caucus.
  • Cosponsor the ABLE Act amendments to improve the program.
  • Cosponsor the OPEN Act to open the possibility of “orphan” drugs to be used for Fragile X treatments and a cure.

Accomplishments

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.

The efforts of NFXF advocates have helped secure more than $325 million in federal funding for Fragile X research and programming.

Your participation makes a difference because local voices are the most effective.

 

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)

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)

Catherine Rowland
Senior Policy Advisor
2161 Rayburn House Office Building
Washington, DC 20515
202-225-2464
catherine.rowland@mail.house.gov

Siblings and self advocates on the steps of the U.S. Capitol

Advocacy Resources

Contact Congress and Register to Vote
NFXF Advocacy Tool to email Congress, register to vote, and more.
Join the NFXF Advocacy Facebook Group
A place to discuss and keep abreast of advocacy efforts.
Join the NFXF STAR Local Advocate Program
The STAR Local Advocacy program helps you advocate with your members of Congress when they are home.
Letter to Congress to Support CDC Funding
The NFXF joined other organizations to support CDC funding.
Letter to Congress to Support NIH Funding
The NFXF joined other organizations to support NIH funding.
Family Letter on Budget and Healthcare
A letter template for you to use to contact your member of Congress about health insurance, Medicaid, and SSI/SSDI.
House Appropriations Letter for FY2019
House letter to the Appropriations Committee to support Fragile X programs and funding for FY17.
Senate Appropriations Letter for FY2019
Senate letter to the Appropriations Committee to support Fragile X funding and programs for FY17.

Support NFXF advocacy efforts.