2024 NIH Fragile X Centers of Excellence — Webinar

In the second webinar in the NFXF’s 2024 Webinar Series, Dr. Tracy King and representatives from each of the current NIH-funded Fragile X Centers of Excellence shared updates and answered questions about their progress to date. 

The timing could not have been better as we gear up for the NFXF’s 2024 Advocacy Day. Every year NFXF Advocates share with their members of Congress how important federal funding has been and still is in advancing Fragile X research. And every year Advocates ask their members to continue—and preferably increase!—the funding designated for these programs so we can continue to learn more about Fragile X. The NIH is one of those federal funding bodies supporting Fragile X research. 

Dr. Tracy King, medical officer in the Intellectual and Developmental Disabilities Branch of the National Institute of Child Health and Human Development (NICHD), kicked off the webinar by sharing the purpose of the NIH and the importance of the Centers for Collaborative Research in Fragile X and FMR1-related Conditions Program. She underlined the importance of diversity, access, and representation in Fragile X research, which we have work to do to improve upon.  

We heard from Dr. Emily Allen on behalf of Fragile X Center at Emory University, Dr. David Nelson behalf of University of Michigan Medical School, Baylor College of Medicine, and the Fragile X Center at Emory University and Dr. Craig Erickson on behalf of Cincinnati Children’s Hospital Medical Center. Each presenter shared the progress of their Center’s project, which included preclinical (or non-human) models of Fragile X, potential treatments for Fragile X syndrome, FXTAS, and FXPOI, and currently enrolling research studies.  

The presenters then answered a series of questions from the audience, including what does “bench to beside” really mean, what is a phenotype, when will additional findings be available from each of the Centers, and where can families learn more about research opportunities. 

Watch the webinar to learn more! 

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.