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, followed by brief Q&A. 

With the NFXF’s 2025 Advocacy Day right around the corner, this webinar could not have come at a better time!  Every year NFXF Advocates share with their members of Congress how important federal funding has been — and still is! — in advancing Fragile X research.  This year’s Advocacy Day feels especially important, as 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.

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

In this webinar, we heard updates from Dr. Peng Jin (Emory University), Dr. Peter Todd (University of Michigan), Dr. Emily Allen (Emory University), and Dr. Craig Erickson (Cincinnati Children’s Hospital Medical Center).  Each presenter shared the progress of their Center’s project, including preclinical (or non-human) models of Fragile X, potential treatments for FXS, FXTAS, and FXPOI, and currently enrolling research studies.  The presenters, joined by Dr. David Nelson (Baylor College of Medicine), then answered a couple of questions, ending the webinar on a note a hope for the future of FX research and appreciation of the collaboration of our special and unique community.  

Watch the webinar to learn more! 

We need this NIH funding, and it’s important that your members of Congress hear from you directly, because your voice matters!  Let your representatives know how these potential changes could impact you, your family, and the disability community at large.  Click here for more information on how the NFXF can help you get your voice heard.

How Does Advocacy Impact Funding for Research?

Learn more about the NFXF Advocacy efforts and the accomplishments here: Advocacy | Stand Up for Fragile X 

Learn more about the The Centers for Collaborative Research in Fragile X and FMR1-related Conditions Program: Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions | NICHD – Eunice Kennedy Shriver National Institute of Child Health and Human Development (nih.gov) 

This program supports research to improve the diagnosis and treatment of Fragile X syndrome (FXS) 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. 

The program is administered through NICHD’s Intellectual and Developmental Disabilities Branch (IDDB). The branch initially funded three Centers in fiscal year 2003 in response to the Children’s Health Act of 2000.