The NFXF Blog
10 Things Everyone Should Know About Fragile X Syndrome
The most effective way to support someone living with FXS in any setting is to maximize their focus, cooperation, and enjoyment. Here's more on the strengths and challenges for individuals with Fragile X, and how to make the most of any experience.
Fragile X-associated Tremor/Ataxia Syndrome — Webinar
Drs. Deborah Hall and Peter Todd joined us for an informative webinar on the topic of Fragile X-associated Tremor/Ataxia syndrome (FXTAS).
Summary of the publication, Insight and Recommendations for Fragile X Premutation Associated Conditions from the 5th International Conference on FMR1 Premutation
This summary gives a broad overview of the main themes discussed at the 5th International Conference on FMR1 Premutation in early 2023.
Dr. Liz Berry-Kravis Explains Important Updates about the Tetra Trials
Learn more from Dr. Liz Berry-Kravis about the important updates to the Tetra trials to make participation easier!
Fragile X Advocacy Newsletter – November 2023
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Fragile X Clinic at Kennedy Krieger Institute
Highlighting the FMR1 and Related Conditions Clinic at the Kennedy Krieger Institute, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
A Message to the Fragile X Community from Harmony Biosciences
A Message to the Fragile X Community from, Jeffrey M. Dayno, MD, President and Chief Executive Officer of Harmony Biosciences
Employment Strategies and Successes — Webinar
In celebration of National Disability Employment Awareness Month, we were joined by a dynamic panel that shared strategies and their individual employment successes! Meaningful employment is important to parents and self-advocates!
Survey: What do you think about at-home research visits?
Dr. Schmitt and the Cincinnati Fragile X Center are conducting a survey to learn about potential barriers and advantages of conducting research visits in the home.
Fragile X Clinical & Research Consortium and Outcome Measures Meeting
The FXCRC met in Denver, CO to discuss the status of treatment in Fragile X syndrome. A half-day outcome measure meeting was held with representatives from the FDA, industry, the FXCRC and families living with FXS.
RECONNECT Trial Provides Flexibility for Families
Zynerba's RECONNECT trial provides flexibility for families with it's new virtual/at-home enrollment option
Meet The Schutz Family and #TeamWally
Meet #TeamWally, the force of family and friends behind Wally Schutz, who are helping to raise awareness of Fragile X syndrome and FMR1-associated conditions and disorders.