Although there are currently no options for approved or experimental gene therapies for FXS, gene therapies in other diseases and conditions do exist and are helping people today! Read the blog to see some examples of gene therapy in the real world!
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.
Check out the latest updates from the Belonging Project research sites! The Belonging Project, one of our newest initiatives, aims to intentionally extend our reach to underserved and underrepresented communities across the United States. We have updates from three Fragile X clinics and our belongingness survey, and will keep you updated as we continue to move forward.
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.
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.
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.
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!
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.
Learn how we are expanding our network of Fragile X clinics to better support individuals living with the Fragile X premutation.
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.
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!
We're on a mission to find and support EVERY family living with Fragile X
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)
You Spoke, We Listened: The Completely At Home RECONNECT Clinical Trial –Participate in Research Without the Stress of Traveling
By Hilary Rosselot Partnering with the National Ataxia Foundation to Raise Awareness for FXTAS In September, we partnered with the National Ataxia Foundation (NAF) on a webinar series about FXTAS. Our first webinar was [...]
