Fragile X Advocacy Programs

Advocacy is key to supporting the mission of the NFXF — to serve the entire Fragile X community, enabling them to live their best lives by providing knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved.

New to advocacy? Need a refresher on the terminology? Our partner, the Everylife Foundation, has a comprehensive glossary of policy and advocacy terms you can use.

Our next Advocacy Day is scheduled for February 23-24, 2026.

The pillar of our advocacy work is Advocacy Day. Every spring, for over 20 years, we gather in Washington, D.C., in a concerted, joint effort to raise awareness of Fragile X in Congress and to ask for research funding and policies that provide the opportunity for a better life for those living with Fragile X.

It is easy to think your voice doesn’t matter — it does. Voices from home are the loudest! They know you are a voter. Showing up, telling your story, educating them, and showing them practical ways they can help is what makes a difference!

Families, self-advocates, caregivers, siblings, doctors, and researchers come together to advocate for the entire Fragile X community and work toward our collective goals.

Learn More about Advocacy Day

Research

We advocate for investments by the federal government in Fragile X research and policies that spur drug and treatment development for rare disorders.

Ensuring successful Fragile X research is a multi-faceted approach that includes participation from researchers and families, federal policies, and private, institutional, and federal investments. The investment by the federal government over the past two decades has exceeded $500 million — much of which is attributed to the work of NFXF Advocates. Specifically:

• Over $500 million in Fragile X research between the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Department of Defense (DOD).
  • National Institutes of Health (NIH) — $68 million in active awards specific to FMR1-related conditions and disorders through the NIH.
  • Centers for Disease Control and Prevention — $2 million per year from the CDC, which funds the FORWARD-MARCH research program.
  • Department of Defense — Over $20 million in grants through the DOD program since 2010
• A comprehensive NIH research plan to guide research targeting all Fragile X-associated disorders.
• The Orphan Drug Act to encourage private companies to repurpose drugs approved for other disorders for rare diseases/disorders.

We have also supported:

• Friends of NICHD Letter: Requesting continued support of NIH and NICHD funding.
• The Defense Health Research Consortium: Requesting continued funding of the Congressionally Directed Medical Research Programs at the DOD.

Better Lives

Everyone with an intellectual and developmental disability has the same right to the pursuit of life, liberty, and happiness. We work for policies to make that possible.

We like to say if you have met someone with Fragile X, you have met someone with Fragile X. Each individual is unique, with unique needs.

Our goal is to promote policies that make better lives possible and give each family an opportunity to choose the path that they feel is best for them. We recognize the importance of social support programs, such as SSDI, Medicaid, and Medicare, the importance of giving families opportunities to save additional resources, and how essential it is for individuals to find work meaningful to them. Our successes include:

• ABLE Accounts, which are tax-deferred savings accounts for adults living with disabilities, similar to 529 college savings accounts.
• The ACE Kids Act to help children on Medicaid with “complex medical conditions,” receive better, coordinated care, including across state lines.
• The RAISE Act to improve federal, state, and local policies for caregivers of adults.

We have also supported:

• Continued, increased access to telehealth beyond the pandemic.
• The HEADS Up Act to make more specialists available under Medicaid and community-based health centers specific to IDD (intellectual and developmental disabilities) by designating intellectual and developmental as a medically underserved population.
• The Charlotte Woodward Organ Transplant Discrimination Prevention Act prohibiting discrimination on the basis of mental or physical disability in cases of organ transplants.

Awareness in Congress

Before a member of Congress can help, they have to know about Fragile X. That is a key component of our advocacy — raising awareness of Fragile X among the policymakers.

NFXF Advocates have been very successful at educating Congress! Visiting offices, sharing personal stories, introducing Congress to self-advocates, and more demonstrates to Fragile X is real, it affects their constituents, and there are ways they can help. This work and our asks are continuous, including:

• Congressional Fragile X Caucus: Members of Congress can join to demonstrate their support of families living with Fragile X. The co-chairs work each year to raise awareness and to support the annual appropriations request for research.
• Gregg and Livingston Harper Internship Program for Individuals with Intellectual Disabilities: When Gregg Harper served in Congress, he established an internship program in the House for individuals with IDD. The mission was two-fold: give these individuals a chance to serve and raise awareness of IDD among the staff and members. It continues to this day, and at least two individuals with Fragile X have participated, and upon his retirement, was renamed the Gregg and Livingston Harper Internship Program for Individuals with Intellectual Disabilities. Livingston is Gregg’s son and has Fragile X syndrome.

Here, we list current legislation that has been introduced and that we are monitoring, including policies that may provide the opportunity for a better life for those living with Fragile X.

Join us each spring for Advocacy Day. We’ve been at it for more than 20 years and can tell you it is one of the most important ways you can help make a difference.

Join our private Facebook group for advocates. It’s where we all keep up on the latest news, share knowledge and experiences, and coordinate advocacy — and we have fun! Join today.

Stay up-to-date via email. Make sure you have the latest on our Advocacy program by signing up for our advocacy emails (choose Advocacy & Public Policy), including educational information, updates, and requests to take action. Subscribe today.

For use on Advocacy Day (or any day), we created these one-pagers to help introduce someone to Fragile X, including the number of affected constituents who are currently residing in each state.

Each year, the president submits a budget to Congress that outlines their spending priorities. These signal their policy priorities too. For instance, you will see significant investments on climate change initiatives in the Biden Budget. Because they want to show a balanced budget, often other agency budgets will be reduced — even if they may not support it — because they know that Congress won’t do that. A recent example is significant reductions to the NIH and CDC proposed budgets.

As you hear about the budget, keep these truths in mind:

• Congress DOES NOT vote on the president’s budget. It is the official suggestion to Congress for spending for the following fiscal year. But it is just a suggestion.
• The budget is a messaging document. The president and his cabinet, members of Congress, and groups use what is or is not included in the budget to move their agenda, stop something they don’t like, or motivate their members to be involved.
• We work to keep the budget in its proper perspective and to use the appropriations process in Congress to secure our Fragile X research funding priorities.

That brings us to Congress and appropriations.

One-third of federal spending is called non-mandatory. That means Congress sets the spending levels each year — this is called appropriations. Our constitution mandates that all spending originates in the House of Representatives. Congress passes legislation setting the spending levels and the President signs or vetoes the whole bill. There are 12 appropriations bills — each one covers multiple agencies that are generally related. We focus on the Defense and the Labor-HHS bills.

The Appropriations Committees start their work in January. Individual members can submit their requests for spending into the committees in March and April (the deadlines vary by the subcommittee and the year). We gather together for our Advocacy Day in late February-early March to ensure we have plenty of time for our Congressional supporters to gain additional support and submit a join request to the Committees.

In theory, the bills are signed by the president before October 1, which is when the new fiscal year starts. If they are not, Congress has to provide temporary funding, called a continuing resolution, or the agency has to stop work (aka “government shutdown”).