ACTION ALERT:
Contact Congress Securing NIH funding for Fragile X

We continue to see proposed changes this Congress that may have a significant impact on the Fragile X community. It’s more important than ever that your members of Congress hear directly from you — your voice matters. Let them know how these changes will impact you, your family, and the broader disability community.

We shared information about the importance of National Institutes of Health (NIH) funding for the Fragile X community in one of our prior action alerts. We need your help again!

Due to delays in NIH Advisory Council meetings and disruptions in the funding process, essential research grants are stalled. Groundbreaking studies on Fragile X syndrome, autism, and related neurodevelopmental conditions are at risk. This has impact on grant funding, including the important Fragile X Centers within the Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions. Without action, researchers may be forced to abandon promising work that could lead to treatments and ultimately a cure.

FRAXA Research Foundation and the National Fragile X Foundation are working together to address this challenge. Now is the time to make our voices heard — help us urge Congress and the NIH to act now!

We are the dedicated voices for Fragile X — if we don’t speak up for Fragile X, no one else will. Now is the time to reach out to your members of Congress and stress the critical importance of continued federal support, including NIH funding for Fragile X research. Share how these funds have impacted your life and the lives of others living with Fragile X and let them know why these investments must continue. Together, we can ensure that progress remains a priority.

What’s Happening?

• The NIH Advisory Councils and study sections, responsible for approving grant funding, have not met as scheduled.
• As a result, critical Fragile X research funding is delayed. In particular, Centers for Collaborative Research in Fragile X, which play a vital role in advancing research, are in jeopardy.
• Fragile X is not just an isolated condition — research into the FMR1 gene is essential for understanding autism, neurodevelopmental disorders, and neurodegenerative diseases like Parkinson’s.

How You Can Help

Advocate for Fragile X with the NIH— Here’s How

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 a telephone number, or you can click each member’s “Contact” button for more options, including email.

2. Share this letter by phone or email

Using the provided letter, concisely and effectively share your story, including why these research dollars matter. You can copy and paste the text of the letter, read portions to the staff over the phone, or attach the letter to an email to the office should you have direct contact information.

• Be prepared to give your address to show you are an active constituent in their district.
• For calls, ask to speak to the aide who handles federal research.

Read the letter from FRAXA Research Foundation and the National Fragile X Foundation outlining the importance of NIH Advisory Councils and Study Sections and their impact on NIH Funding for Fragile X Research.

What to Expect

Remember, Congress members want to hear from their constituents. When you send an email, you will likely receive an automated response noting your email has been received. When 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.

Why Your Voice Matters

• Legislators respond when they hear from their constituents.
• By taking action, you help ensure continued investment in Fragile X research.
• Funding delays could set back progress — we can’t let that happen!

What Happens Next

We understand there is much uncertainty surrounding recent developments and their potential impact on the Fragile X community. Please know that we are closely monitoring the situation and working with our strategic partners to stay informed.

The NFXF will continue to champion both the Fragile X-specific advocacy initiatives and the policies that impact the broader disability community. We appreciate the opportunity to partner with FRAXA Research Foundation on this important effort, and 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.