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.
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 [...]
We live in a day and age of social sharing, and that is not going anywhere. However, when we participate in a clinical trial, we have to understand that we cannot share everything in order to protect the integrity of the trial.
October is a time that draws the attention of the nation on critical issues related to disability employment, bringing awareness to a subject that we know has importance all year round. We know many individuals living with Fragile X want to work and though some do, not everyone who wants a job has found one that best fits their strengths and skillsets. We are determined to help you educate yourself on the supports that exist and how to best advocate for you or your loved ones needs in the workplace.
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
NFXF Executive Director, Hilary Rosselot, and Advocacy Ambassador, Dillon Kelley, attended the CEO Commission for Disability Employment’s Employment Summit and Hill Day in September 2024. It was an inspiring, action-packed few days, and they are excited to share more about their experience and why it matters to the Fragile X community.
