Following the recent election, more than 120 new members of Congress are expected to take office when the 120th Congress convenes in January 2027. Each new Congress brings an opportunity to introduce policymakers to Fragile X-associated conditions and the issues that affect individuals and families across our community.
Many incoming members may be unfamiliar with Fragile X and its multigenerational impact. Helping them understand the needs of our community is an important part of ensuring that Fragile X remains part of conversations about federal research funding, healthcare, education, Medicaid, and community-based supports and services.
What Does a New Congress Mean for Current Priorities?
The transition to a new Congress also affects legislation. Bills that have not become law by the end of the current Congress must be reintroduced in the 120th Congress to be considered again. They receive new bill numbers, and sponsors, co-sponsors, or legislative language may change.
While this means renewed work with congressional offices, it does not erase the relationships or progress already made. The NFXF will continue working with congressional champions and other partners to advance priorities important to the Fragile X community.
Currently more than $112 million in active federal awards supports Fragile X/FMR1-related research. Continued advocacy will ensure that policymakers understand the value of this work and the importance of sustaining attention and investment in Fragile X.
How Can You Be Part of the Conversation?
Every member of our community has a role in helping policymakers understand Fragile X and the impact it has on your life. Sharing your experiences, talking about the issues that matter to your family, and helping elected officials understand the impact of their decisions all contribute to our collective voice.
NFXF Advocacy Day returns to Washington, DC, on February 22–23, 2027. This is an opportunity for members of the Fragile X community to meet with congressional offices, share their experiences, and help educate policymakers. More information about registration and participation will be available soon.
We recognize that traveling to Washington is not possible for everyone. That doesn’t mean you have to miss out on advocating. While members of our community are meeting with congressional offices on Capitol Hill, the NFXF will provide resources to help others participate from home. These will include sample scripts and guidance for calling or emailing your Members of Congress, along with social media images you can share.
Whether you are on Capitol Hill or advocating from home, you are part of the collective voice for Fragile X. Our experiences and perspectives matter, and together we can help ensure that the needs of our community are heard.
If We Don’t Advocate for Fragile X, Who Will?
Visit the NFXF Advocacy page to learn more about our priorities. Please reach out to our team at advocacy@fragilex.org with any questions.
