The NFXF Blog
Belonging in Fragile X: A Survey Addressing Diversity, Equity, and Inclusion in the Fragile X Community
Make a difference and take the Belonging in FX Survey today! Belonging is when each member of a community is treated and feels like a full member of that community. Sharing your experiences will help us close the gap in diversity, promoting inclusion and belonging within the Fragile X community.
An (Oral) Story of the National Fragile X Foundation
Dr. Hagerman told a short story about how the National Fragile X Foundation came to be at this year’s NFXF International Fragile X Conference, and we want to share her story with you.
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.