The NFXF Blog
EXPERIENCE Clinical Trials – Join Today!
You may have heard about EXPERIENCE (Evaluation of Fragile X Experience in Cognition Expression) clinical trials as the Tetra studies or the studies of BPN14770 in Fragile X syndrome. EXPERIENCE is now being managed by Shionogi and clinical trial sites across the U.S. are still enrolling qualified male participants aged 9-45.
NFXF Webinar Series: Gene Therapy & the FXS Community: A Review of Community Surveys
In December 2024, the NFXF put on a webinar discussing gene therapy and the perspectives from those in the FX community. During this webinar, expert Dr. David Hampson laid the groundwork of understanding what gene therapy is, followed by three different groups - The Patrick Wild Centre, Mt. Siani Hospital, and the NFXF - presenting on their community surveys, which all aimed to understand the perspectives on gene therapy from the Fragile X community.
Preparing for the Return to Routine After a Long Break: Tips for Educators, Employers, and Caregivers
The return after a long break can be a difficult transition for anyone, especially an individual living with FXS. With thoughtful planning and a compassionate approach, the entire support team can help ease the process.
NFXF Belonging Project
The Belonging Project, one of our newest initiatives, aims to intentionally extend our reach to underserved and underrepresented communities across the United States. Hear from each of the three Fragile X clinics and our own in-house belonging survey, on how we’ve begun work to understand the challenges to diagnosis, treatment, and feeling a sense of community belonging faced by Black, Hispanic, and Native American groups and the providers who serve them.
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.