Advocate for Fragile X From Home

We just wrapped up our annual in-person Advocacy Day!

If you were not able to join us, you can still advocate from home by sharing our Asks with your members of Congress. Be a part of the collective voice for Fragile X! We are the dedicated voices for Fragile X—if we don’t speak up for Fragile X, no one else will.

What you need to know:

A key resource we shared with our members of Congress during Advocacy Day was our 2025 NFXF Federal Research Funding and Legislative Policy Priorities grid. This grid, pictured here to the right, outlines the priorities and key issues important to the entire Fragile X community. The NFXF leads the annual request for Fragile X research funding, including the language used to direct agencies responsible for funding this research. This process, known as appropriations, allocates funds for specific purposes within the government, allowing for the release of funds but not necessarily resulting in immediate expenditure.

You can find brief descriptions of the bills listed on the grid introduced in the 118th Congress HERE. Note some of these have been re-introduced since.

How You Can Advocate From Home

1. Identify your members of Congress.

• Visit Congress.gov’s Find Your Members tool.
• Enter your full address to identify your members of Congress.
• The results will provide contact details (phone number or email) or a contact form.

2. Share your story:

• Be prepared to give your address to show you are an active constituent in their district.
• When calling, ask to speak to the aide who handles federal research.
• Using the script below, concisely and effectively share your story, including why research dollars matter, and the Asks.

Introduction

1. Hello, my name is [NAME] and I live at [ADDRESS: Street address, city, state, zip code]. I am a constituent of [Sen./U.S. Rep. NAME].
2. I am a [state your relationship to Fragile X; e.g., parent, sibling, self-advocate, researcher, clinician, professional, etc.] and I am deeply grateful for the federal government investments in Fragile X research. These investments in research have been indispensable in advancing the knowledge of Fragile X, a rare genetic condition, and the Fragile X premutation, which has associated conditions similar to Alzheimer’s/dementia and polycystic ovarian syndrome.
3. Thanks to these funds, significant strides in understanding Fragile X syndrome and the Fragile X premutation conditions have been made that impact many individuals and families like mine. Researchers dedicated to Fragile X are advancing our understanding and moving us closer to potential treatments and a cure. However, there is still much more to learn, and continued funding is essential for identifying effective treatments for these complex, life-changing conditions.

Asks:

Script to use for your HOUSE member:

I urge the [U.S. Representative] to support the following:

1. Support for Fragile X at the NIH and the CDC:

• CDC Funding: The CDC has an annual line item in their budget request for $2M for Fragile X, which supports the FORWARD project. This project collects longitudinal data on individuals with Fragile X and makes it available to researchers. The numerous publications resulting from FORWARD data have been instrumental in shaping widely used treatment recommendations for Fragile X.
• NIH Funding: Significant NIH-funded research has advanced our genetic understanding of Fragile X, supported animal models, facilitated clinical trials, provided infrastructure for interdisciplinary collaboration, and enhanced general education and awareness

2. Join the Congressional Fragile X Caucus:

• The Caucus is committed to understanding the priorities of the Fragile X community. It does not require any financial commitment or agreement to any policy positions.
• To join the Fragile X Caucus or sign the letter, contact Maria Costigan in Rep. Joe Courtney’s office or John McDonough in Rep. Chris Smith’s office.

Script to use for your Senator:

I urge the [U.S. Senator] to support the following:

1. Request that Fragile X be included as an authorized research area for the DOD’s Peer Reviewed Medical Research Program (PRMRP).

• The PRMRP program is within the Congressionally Directed Research Program (CDMRP).
• Contact Kendall Moore in Senator Cindy Hyde-Smith’s office to sign the letter and include this in your appropriations request.

2. Support legislation to restore the 57% cut to the Congressionally Directed Medical Research Program.

• Cuts of this magnitude will significantly disrupt research into new therapeutics for diseases and disorders that impact the men and women in the Armed Services, as well as veterans, military families and the general public.
• CDMRP grants neither duplicate nor supplant NIH or VA research efforts but rather enhance those efforts. They fund highly innovative projects – support that is typically unavailable through other federal programs.

What to Expect

Remember, Congress members want to hear from their constituents. If you send an email, you will likely receive an automated response noting your email has been received. If you call, a staff member will likely listen to your comments, note them, thank you, and end the conversation. You may not get a lot of back and forth, and that’s OK! Your comments will be logged, and these are typically tallied and shared with the member.

What Happens Next

We understand there are immediate concerns, and we will continue to advocate and share the action alerts, but we can’t lose focus on our annual advocacy efforts. As the appropriations process for the next fiscal year begins, it’s vital that we stay focused on securing the funding and legislative support necessary for the Fiscal Year 2026 Budget. Our next steps in advocacy will shape the future of Fragile X research and support.

If you receive any official notice—whether by email or in writing—of federal funding reductions, service cuts, or loss of support due to these budget changes, we ask that you please share that information with us (email advocacy@fragilex.org). We will ensure it is passed directly to our Congressional champions. They have emphasized that while there is a lot of uncertainty and speculation, they need specific, detailed information to advocate effectively for the Fragile X community.

The NFXF will continue to champion both the Fragile X-specific advocacy initiatives and the policies that impact the broader disability community. We will continue to provide you with accurate information to help you advocate for yourselves, educate your members of Congress, and partner with groups like ours to make our voices heard.

Your advocacy is a key part of ensuring continued support for individuals with Fragile X. Let’s work together to make our voices heard!

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