The People Who Are The NFXF

By Robby Miller & Hilary Rosselot

This year the National Fragile X Foundation is celebrating its 40th anniversary! It’s hard to believe we have already spent 40 years serving the Fragile X community -families living with Fragile X, their loved ones, and professionals alike- and I think I speak for our entire team when I say we look forward to serving the community for the next 40 years (and more!). As a tribute to the organization’s rich history, we are cataloging our journey in monthly blog posts. We have so many people and institutions in our history it’s hard to capture them all, but we will certainly do our best. Join us as we walk down memory lane, memorializing how the National Fragile X Foundation got to where we are today so we can dream together of the brightest possible tomorrow.

– Hilary Rosselot

The People Who Made Up and Make Up the NFXF

So many people over the past 40 years have helped make the National Fragile X Foundation what it is today! Volunteers, team members, donors, advocates, including self-advocates, clinicians and clinic teams, researchers, therapists, educators, counselors, advisors and others all working together with a single goal in mind – improve the lives of those impacted by Fragile X.  

As described in earlier 40th anniversary blog posts, and starting with Dr. Randi Hagerman and a handful of volunteers (including graduate students) back in 1984, the NFXF has steadily grown as the needs of the community have grown.  

Team 

Starting with a single paid staff member in the 1990’s, the NFXF team is now comprised of eight full-time and part-time employees plus several as-needed, contractors. These NFXF Team members are dedicated to their jobs and work hard to advance the NFXF’s mission and strategic plan.  

Volunteers 

First and foremost are those who serve, or have served, on the NFXF Board of Directors. Serving as a board member is a serious commitment involving mission and fiscal oversight, advising the executive director, assistance with fundraising and numerous other responsibilities. Board members have played a critical and essential role in the NFXF since its founding. 

Another key group of volunteer partners consists of those previously and presently involved in the NFXF Community Support Network. These dedicated and passionate parents and family members are committed to providing peer-to-peer support, guidance, and connection by sharing their personal experiences and insights all while navigating their own journeys with Fragile X. Together, this network of individuals and families are committed to advancing the NFXF’s mission to serve the entire Fragile X community.  

Advocates and Self-Advocates are a subset of volunteers who help by supporting legislative initiatives in Congress and in their home states and, as self-advocates, by their willingness to share their personal stories of what it is like to live with Fragile X syndrome or other associated conditions. Advocates of all types have been essential to the work of the NFXF since the beginning. 

No description of volunteers would be complete without mentioning those professionals who regularly advise the NFXF (in their spare time!), such as members of the NFXF Scientific & Clinical Advisory Committee, the NFXF’s Fragile X Clinical & Research Consortium and the NFXF’s Clinical Trials Committee. Not to mention all the one-off questions, long email discussions, and special projects and collaborations.  

The people who have contributed to the work and mission of the NFXF are far too many to mention by name. There have been dozens of staff, hundreds of volunteers, and many thousands of donors, and you know who you are, and so do we. The NFXF extends its heartfelt thanks!