The Fragile X research community is facing a critical funding challenge, and we need your help. Due to delays in NIH Advisory Council meetings and disruptions in the funding process, essential research grants are in danger of being stalled. Groundbreaking studies on Fragile X syndrome, autism, and related neurodevelopmental conditions are at risk. Without immediate 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!
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 on Fragile X is essential for understanding autism, neurodevelopmental disorders, and neurodegenerative diseases like Parkinson’s.
How You Can Help
1 Contact Your Members of Congress
- Use Congress.gov’s Find Your Members tool to identify your Senators and Representatives.
- Enter your full address to find your elected officials.
- If your senator is on the Senate HELP Committee, they play a key role in NIH funding decisions.
- Click their name to access their contact page.
- Paste the message below into their contact form.
2 Send This Message
Re: NIH Advisory Councils and Study Sections
On behalf of the Fragile X community, we express deep concern that appropriated federal research funds remain blocked from reaching grantees, halting critical, curative research. The cancellation of NIH Advisory Council meetings and the ongoing pause on Federal Register Notices have disrupted the approval of already peer-reviewed grants and the review of new NIH grant applications.
Fragile X syndrome and associated conditions stem from a single-gene mutation, making it the most common inherited cause of intellectual disability and autism. Up to 100,000 Americans have Fragile X syndrome, while 1.5 million carry variations of the mutation, putting them at risk for neurodegenerative disorders like FXTAS (similar to Parkinson’s) and FXPOI (causing infertility and early menopause).
FRAXA Research Foundation and the National Fragile X Foundation urge the administration to immediately lift the pause on Federal Register Notices and allow NIH Advisory Councils and study sections to meet. These delays will harm ongoing studies and stall promising new research, particularly the Centers for Collaborative Research in Fragile X (P50 Centers), where outstanding grant applications are in limbo. Without funding certainty, progress is at risk, and talented researchers will be lost.
We appreciate the administration’s commitment to strengthening NIH and look forward to working together to advance biomedical research, including Fragile X. Please prioritize resolving this funding delay.
Thank you,
(your signature)
(your name)
(your full address)
Phone: (your phone)
Email: (your email)
- Fill in your name, state, and personal story if applicable.
- If calling, ask to speak with the aide who handles federal research funding and share your message.
3 Share This Effort!
- Forward this post to friends, family, and advocacy groups.
- Post on social media using #FXResearch #NIHfunding #ActForFragileX.
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 for years — we can’t let that happen!
Official Joint Statement from FRAXA & NFXF
To reinforce our advocacy, FRAXA Research Foundation and the National Fragile X Foundation have issued a joint statement urging NIH and Congress to act. This letter, signed by our leadership, highlights the urgent need for continued funding for Fragile X Centers and critical research initiatives.
