2025 NIH Fragile X Centers of Excellence — Webinar

In our first webinar in the NFXF’s 2025 Webinar Series, we heard updates from each of the current NIH-funded Fragile X Centers of Excellence. 

Every year in February, NFXF Advocates meet with their members of Congress and share their stories illustrating the ongoing importance of federal funding in advancing Fragile X research. With the 2025 Advocacy Day right around the corner, this webinar couldn’t be more timely!

Why is this year’s Advocacy Day especially important? Congress is gearing up to make crucial decisions about our nation’s priorities and how to fund them.  The NIH is one of those federal funding bodies that has been supporting Fragile X research — for over two decades.

About the Webinar

NFXF Executive Director Hilary Rosselot opens the webinar by detailing the importance of federal funding and its impact on the Fragile X community.  Specifically, the National Institutes of Health (NIH) funds the Centers for Collaborative Research in Fragile X and FMR1-related Conditions Program, with the first grant being awarded in 2003. The program’s goal is to improve the diagnosis and treatment of FXS and other FMR1-related conditions.

Representatives from each of the NIH-funded Fragile X Centers of Excellence report on their progress, including preclinical (or non-human) models of Fragile X, potential treatments for FXS, FXTAS, and FXPOI, and currently enrolling research studies. These presenters are:

• Dr. Peng Jin, Emory University
• Dr. Peter Todd, University of Michigan
• Dr. Emily Allen, Emory University
• Dr. Craig Erickson, Cincinnati Children’s Hospital Medical Center

The presenters were then joined by Dr. David Nelson from the Baylor College of Medicine for a brief Q&A that ended the webinar on a hopeful note for the future of FX research and appreciation of the collaboration of our special and unique community.  

Watch the webinar to learn more! 

Fragile X needs continued NIH funding, and it’s important that your members of Congress hear from you directly because your voice matters!  Let your representatives know how the indirect cost cuts and any additional proposed funding changes could impact you, your family, and the disability community at large. Learn how to get your voice heard.

Learn More About Advocacy and Its Impact on Funding for Fragile X Research

Fragile X needs continued NIH funding, and it’s important that your members of Congress hear from you directly because your voice matters! Let your representatives know how the indirect cost cuts and any additional proposed funding changes could impact you, your family, and the disability community at large. 

• Learn how to get your voice heard with your members of Congress — Action Alert: Contact Congress About the Importance of NIH Research Funding for Fragile X.
• Learn more about the NFXF’s advocacy efforts and accomplishments.
• Learn more about The Centers for Collaborative Research in Fragile X and-related Conditions Program. This program supports research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions. These Centers are geared toward stimulating multidisciplinary, multi-institutional research, with the common goal of facilitating the translation of basic research findings from bench to bedside and bedside to community.
• Learn more about the NICHD’s Intellectual and Developmental Disabilities Branch, which administers the program. IDDB initially funded three Centers in fiscal year 2003 in response to the Children’s Health Act of 2000. Additional NIH institutes allocate funds into these Centers and other NIH grants for Fragile X.