The NFXF Blog
Fishing for a Cure: The Christoffs Have Done it Again!
The annual Fishing for a Cure fundraiser, hosted by Joey Christoff in honor of his son Mitchell, was another great success in 2024! Check out the big fish and the big smiles.
Gene therapy simplified: what is it and how does it work?
Gene therapies are being developed at a rapid rate. Although there are currently no FDA-approved or interventional gene therapies for FXS, the future has never looked brighter for treating the root cause of FXS!
Enjoying Your Winter Holiday Season
Each person with Fragile X syndrome is different, so what works for one may not work for the other. We want you to enjoy the season, so we’ve gathered a list of activities, tips, and advice to set you up for success.
Hope for the Future – Adult Resources
Learn how we are equipping families with resources needed to plan for the future with confidence, while we continue to work towards treatments for Fragile X.
Hope for the Future – Expanding Clinical Care
Learn how we are expanding our network of Fragile X clinics to better support individuals living with the Fragile X premutation.
Navigating Challenging Behaviors — Webinar
Tracy Stackhouse, MA, OTR/L, Lauren Moskowitz, PhD, Jennifer Epstein, PsyD, and Missy Zolecki joined us for a one-hour Q & A discussing Navigating Challenging Behaviors.
Messages of Gratitude — Video
When we take a moment to reflect on what means the most to us in this season of gratitude and joy, the Fragile X community tops the list.
Hope for the Future – NFXF Belonging Grant
Our NFXF Belonging Grant is already making an impact. Learn how we're expanding this program to reach even more families impacted by Fragile X!
Hope for the Future – Find Our People — Video Slideshow
We're on a mission to find and support EVERY family living with Fragile X
Females with Fragile X Syndrome — Webinar
Barb Haas-Givler, MEd, BCBA, Cora Taylor, PhD, Nicole Tartaglia, MD, Tracy Jordan, PhD, and Vicki Wilkins, MD joined us for a one-hour Q & A discussing Females with Fragile X Syndrome.
Study: Somatic symptom development in 6-12 year old females with an FMR1 mutation (SoS Study)
Researchers at the New York State Institute for Basic Research are conducting a study to better understand the development of physical (somatic) symptoms in females living with and without an FMR1 gene variation.
The Michigan Medical Fragile X Clinic
Highlighting the Fragile X Clinic at the Michigan Medicine Fragile X clinic , a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)