Advocate for Fragile X From Home
Advocating from home is a key part of ensuring continued support for individuals with Fragile X. Let’s work together to make our voices heard!
Potential Impact of the Continuing Resolution on CDMRP/PRMRP Funding Opportunties
The Congressionally Directed Medical Research Program could face a 57% reduction in funding with the proposed continuing resolution.
ACTION ALERT:
Contact Congress Securing NIH funding for Fragile X
We continue to see proposed changes this Congress that may have a significant impact on the Fragile X community. It’s more important than ever that your members of Congress hear directly from you — [...]
Kaerus Bioscience Completes Successful Phase 1 Trial, Demonstrating Promise for KER-0193 BK Channel Modulator for Fragile X Syndrome
Yesterday, Kaerus Bioscience announced that it has successfully completed its Phase 1 trial and demonstrated 'proof of mechanism' with their novel BK channel modulator, KER-0193, being developed for Fragile X Syndrome!
Welcome Class of 2025 Board Members
Executive Director Hilary Rosselot welcomes the incoming class of 2025 Board Members. We look forward to working together to serve the entire Fragile X community.
ACTION ALERT:
Contact Congress About the Importance of NIH Research Funding for Fragile X
We are seeing numerous proposed changes this Congress that would have a significant impact on the Fragile X community. It’s more important than ever that your members of Congress hear directly from you — [...]
ACTION ALERT:
Advocate for Medicaid and the Fragile X Community
Action Alert- Advocate for Medicaid protection and the Fragile X community.
Gene therapies in action: a look at examples of successful treatments
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!
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.
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.
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!
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.
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.