So many people — volunteers, team members, donors, advocates, self-advocates, clinicians and clinic teams, researchers, therapists, educators, counselors, advisors, and others — over the past 40 years have helped make the National Fragile X Foundation what it is today!

The NFXF has played a key role in the global community of Fragile X families and professionals throughout the entirety of its existence, including working in partnership and alongside with many other Fragile X patient advocacy organizations, clinicians, and researchers.

The NFXF has supported, facilitated, and coordinated research throughout its 40-year history! Here are just some of the highlights.

NFXF Executive Director Hilary Rosselot and Advocacy Ambassador to the NFXF Board of Directors Dillon Kelley attended the CEO Commission for Disability Employment’s Employment Summit and Hill Day in September. 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 with you.

In the early years, attendance was considered great if a few hundred showed up. Nowadays, three to four times that number is the norm!

The NFXF launched a website in the mid-90s. Since many people had little to no online access, we would send them the entire website, which had been downloaded to a CD!

The 1990s and the increased scientific study of Fragile X and how the growing body of knowledge impacted the work of the NFXF.

In the early years, the inherited nature of Fragile X was not fully understood. However, early pioneers were making progress sorting out the genetics.

As a tribute to the organization’s rich history, we have cataloged our journey in monthly blog posts starting here, the year of our founding, 1984.

NFXF board member Jed Seifert represented the NFXF at the CEO Commission’s Hill Day and shared his reflections on this powerful experience.