The NFXF Blog
A Global Fragile X Community
The NFXF has played a key role in the global community of Fragile X families and professionals throughout the entirety of its existence, including working in partnership and alongside with many other Fragile X patient advocacy organizations, clinicians, and researchers.
The 2024 RJH Summer Scholar Presentations Are Now Live!
We asked our 2024 NFXF-funded Randi J Hagerman Summer Scholars to summarize their summer project in a 15-minute video presentation, and here they are!
Pharmacogenomics and the Fragile X Community: Interest and Prior Understanding
Researchers at the University of Alabama are looking for members of the FX community to take their online survey so they can explore the knowledge & opinions of the FXS community on pharmacogenomic testing.
Lunch & Learn Series: “Mosaicism Type and Cognitive & Behavioral Functioning Among Males with FXS” and “Sleep Problems in FXS: Cross-Sectional Analysis of a Large Cohort”
Dr. Elizabeth Berry-Kravis and Dr. Walter Kaufmann joined us for a 45-minute webinar where they presented on two of the "top 10 most-cited articles" in the American Journal of Medical Genetics Part A. Presentations were then followed by a moderated Q&A.
Panel Discussion — Gene Therapy
As gene therapies continue to enter rare disease and Fragile X spaces, we know that our community has become increasingly curious about what this means for Fragile X. At the 19th NFXF International Fragile X Conference, experts shared their thoughts on gene therapies and their future in the Fragile X world.
Brain & Behavior Study
Researchers at Purdue University are conducting a natural history research study to learn about brain activity in females, ages18-60 years, living with the FMR1 premutation.
Families for Fragile X Host Successful “Fragile X Walk”
Families for Fragile X held their first “Fragile X Walk” event on July 20 in Warwick, Rhode Island. More than 50 family members, caregivers, and the general public participated their first X Strides event.
Legislative Advocacy
The National Fragile X Foundation has been advocating for research funding and for laws and regulations sensitive to the needs of the Fragile X community, for more than 25 years.
Our 2024 NFXF Awardees
Our 2024 NFXF awards are in! Learn more about each award and the respective awardees.
2024 Industry Updates — Presentation
Three of our industry partners working on treatments for Fragile X syndrome (FXS) presented updates on their research at the 19th NFXF International Fragile X Conference on July 27, 2024. Presenters included representatives from Tetra Therapeutics, Harmony Biosciences, and Spinogenix.
About Me Template- For School or Work Environments
Use our customizable "About Me" template to help describe Fragile X to your schoolmates or colleagues.
Embracing the Xtraordinary: Inspiration from the Fragile X Community
Listen to Carly Dolan, Jill Dolan, David Tillman, and Tamaro Hudson share their Xtraordinary stories during our Keynote at the 19th NFXF International Fragile X Conference.