Hope for the Future – NFXF Belonging Grant

NFXF Belonging Grant Making an Impact in Underserved Communities

One of our newest initiatives aims to intentionally extend our reach to underserved communities across the United States. In partnership with four Fragile X clinics, we’ve begun work to understand the challenges to diagnosis and treatment faced by Black, Hispanic and Native American communities and the providers who serve them. And we’re proud to say we’re already having a major impact!

“Since we started this project funded by the NFXF Belonging Grant this summer, we have identified two new individuals with a diagnosis of Fragile X syndrome in the Pacific Islander and Native American communities. Also, we have identified that one of their siblings is a carrier and the other’s sibling is likely full mutation but still untested. One of these children is a teenager who had never been tested for genetic causes of autism prior to Belonging Grant outreach. Even if these 4 children are the only new patients we find through the Belonging Grant, it has made a huge, meaningful life-changing difference for 2 families.”
– Victoria Wilkins, MD, Medical Director at the University of Utah Fragile X Clinic

You too can support families like the ones Dr. Wilkins is now treating by making a gift today at fragilex.org/donate. Together we can ensure more families learn about their Fragile X diagnosis.

We are closer than ever to possible treatments to improve the lives of those with Fragile X and their loved ones. We know that not everyone with Fragile X has access to the support and care they need to reach their full potential, so we’re on a mission to find and support every family living with Fragile X. Join us!

You can help make a difference!