The NFXF Blog
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.
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.
NFXF Belonging Project: Site Updates
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.
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.
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!