Robby Miller
Robby has been affiliated with the NFXF since 1999 and has spent over 50 years helping children with special needs, their families, and the professionals who work with them. He first became a part of the Fragile X community when close friends had two children with Fragile X syndrome. Robby is particularly interested in how families learn about, access, and receive meaningful care and services. This interest led him to co-found the Fragile X Clinical & Research Consortium. In his spare time, you’ll find Robby singing and playing rhythm guitar in a band with his long-time musical partners.
More from the Author
A new study from the CDC and NFXF examines geographic access to Fragile X specialty care and identifies gaps in access to FXCRC clinics across the U.S.
The NFXF joined researchers and clinicians at the 6th International Conference on Fragile X Premutation Associated Conditions in Italy to advance understanding of FXTAS, FXPOI, and related conditions, update treatment recommendations, and strengthen global Fragile X collaboration.
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 National Fragile X Foundation has been advocating for research funding and for laws and regulations sensitive to the needs of the Fragile X community, for more than 25 years.
The NFXF has supported, facilitated, and coordinated research throughout its 40-year history! Here are just some of the highlights.
In 2006, there were 11 medical institutions in the country with doctors and other specialists focusing on Fragile X syndrome. Today, there are more than 30 Fragile X clinics.
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.
We had numerous talks at medical centers and 75+ meetings with individual families on our third trip with the MIND Institute’s Colombia Project of Hope.