Advocacy

Advocacy 2018-10-15T06:39:48+00:00

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 the CDC, ABLE accounts for savings, facilitating the use of potential new drugs for treatments and a cure, and other items.

Overall, our goal is to be a voice of solutions, work across party lines, and improve the lives and opportunities of people living with Fragile X. To join our team, scroll down for our advocacy team form.

Agenda

We—NFXF—are currently advocating for:

  • Cosponsor the RISE Act (H.R. 2782 and S. 1295).
    Allows individuals to use existing individualized education programs (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 Congressional Fragile X Caucus.

Accomplishments

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

Join Our Advocacy Team

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 Budge 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 FY19.
Senate Appropriations Letter for FY2019
Senate letter to the Appropriations Committee to support Fragile X funding and programs for FY19.

Help support our advocacy efforts