NFXF Webinar Series

2024 NIH Fragile X Centers of Excellence

01 h 03 m

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.

About the Webinar

With Drs. Tracy King, Emily Allen, David Nelson, and Craig Erickson
Learn more about the presenters

The timing could not have been better as we gear up for the 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 advocates ask their members to continue — and preferably increase every year! — 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 need to improve upon.

We heard from:

  • Dr. Emily Allen, Fragile X Center at Emory University
  • Dr. David Nelson, University of Michigan Medical School, Baylor College of Medicine, and the Fragile X Center at Emory University
  • Dr. Craig Erickson, Cincinnati Children’s Hospital Medical Center.

Each presenter shared the progress of their Fragile X 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 “bench to bedside” really means, what a phenotype is, when additional findings will be available from each of the Centers, and where families can learn more about research opportunities.

About the program: This program supports research to improve the diagnosis and treatment of Fragile X syndrome (FXS) and its related conditions. These Fragile X Centers are geared toward stimulating multidisciplinary, multi-institutional research to facilitate 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). In fiscal year 2003, the branch initially funded three Fragile X Centers in response to the Children’s Health Act of 2000.

About the Presenters

Tracy King headshot.

Tracy King

National Institute of Child Health and Human Development
Associate Director for Prevention and Medical Officer

Tracy King, MD, MPH, earned a bachelor’s and a medical degree from Baylor College of Medicine. She completed her pediatric residency training at the Boston Medical Center and Boston Children’s Hospital. She also completed a research fellowship in general academic pediatrics at the Johns Hopkins School of Medicine while earning a master’s degree in public health from the Johns Hopkins Bloomberg School of Public Health.

As NICHD associate director for prevention, Dr. King oversees initiatives and programs related to the prevention of health problems among children and adolescents, pregnant, lactating, and postpartum women, and people with intellectual and physical disabilities.

As an NICHD CDBB medical officer, Dr. King manages the pediatric primary care research portfolio. She is a board-certified pediatrician with extensive research, clinical, and teaching experience. She also serves as NICHD’s liaison to the U.S. Preventive Services Task Force.

Emily Allen, PhD, headshot.

Emily Allen

Emory University School of Medicine, Department of Human Services
Associate Professor

Emily Allen, PhD, graduated from the University of Georgia with a bachelor’s degree in biology and Emory University with a PhD in genetics. She has worked on studies of Fragile X-associated disorders at Emory University with Dr. Stephanie Sherman since the early 2000s. Her primary research focus has been on disorders and characteristics associated with the Fragile X premutation, such as Fragile X-associated primary ovarian insufficiency (FXPOI) and Fragile X-associated tremor/ataxia syndrome (FXTAS).

David Nelson headshot

David Nelson

Baylor College of Medicine, Houston
Professor, Molecular and Human Genetics

David Nelson, PhD, is a professor of molecular and human genetics and the director of both the graduate program in cancer & cell biology and integrative molecular and biomedical sciences at Baylor College of Medicine. He is also a director of Baylor’s Michigan Emory Fragile X Research Center, an NIH-funded center aimed at understanding mechanisms whereby premutation-length CGG repeats cause neurodegenerative and ovarian disorders. The Nelson lab has been involved in research into the causes of and therapies for Fragile X syndrome since the late 1980s, contributing to the discovery of the repeat expansion mutation that results in the disorder and the gene that is affected. For over 30 years, the Nelson lab has worked to define both the characteristics of the unusual repeat expansion in the disease and the functions of FMR1, the gene that is downregulated in the disease. 

Craig Erickson

Craig A. Erickson

Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine
Professor of Psychiatry

Craig A. Erickson, MD, is a professor of Psychiatry at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati College of Medicine-Affiliated. Dr. Erickson leads a neurodevelopmental clinical and research group focused on improving clinical care through research discovery. He is the director of the Cincinnati Fragile X Research and Treatment Center, one of the largest such programs in the world. He serves as the chair of the Clinical Trials Committee organized by the National Fragile X Foundation and is a leader in translational medicine efforts in Fragile X syndrome, autism, and related disorders. Additionally, he is the director of research in the Division of Psychiatry at Cincinnati Children’s Hospital.