Legislative Advocacy

By Robby Miller

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

Legislative Advocacy

Making a Difference with the Laws and Regulations Impacting the Community

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. We are proud of our role in seeing continued growth in funding from the National Institutes of Health (NIH), the Centers for Disease Control (CDC) and even the Department of Defense (DOD).

The NFXF’s legislative advocacy efforts can trace their roots to NFXF co-founder Dr. Randi Hagerman’s testimony before Congress around the year 2000. This may have been one of the first times that many members of Congress heard the words “Fragile X.” Then, in the early 2000’s, the NFXF began its annual effort to organize and train parents and professionals to travel to Washington, DC to meet with legislators and their health aides to advocate on behalf of Fragile X.

One successful example of the NFXF’s advocacy efforts led to the increasingly important role that the NFXF’s Fragile X Clinical & Research Consortium (FXCRC) plays in advancing knowledge and providing state-of-the-art care. Though the NFXF launched the FXCRC on its own, within a few years the CDC, at the urging of Congress, provided support for its expansion and then utilized the FXCRC’s network of clinics when it began funding a longitudinal, natural history study of Fragile X syndrome called “FORWARD-MARCH.

Over the years the foundation has partnered with various other organizations such as FRAXA Research Foundation, Autism Society of America, National Down Syndrome Society, the CEO Commission and EveryLife Foundation for advocacy purposes. Our collaborative efforts have benefited not just those with a Fragile X condition, but also the general disability community. Case in point: The NFXF organized a meeting with the Autism Society and the Down Syndrome Society that ultimately led to a coalition of numerous organizations and, ultimately, Congress creating the ABLE Act. (The ABLE Act enables people with disabilities to have savings accounts while receiving benefits.)

No description of the NFXF’s legislative advocacy would be complete without mention of former U.S. Congressman and Fragile X parent Gregg Harper. Both in and out of Congress, Gregg has provided – and continues to provide – invaluable guidance as the NFXF navigates the often complicated Federal government system of offices, committees, centers, procedures, etc.

Though many legislative challenges remain, in this 40^th anniversary year of the NFXF, we can point to continued growth for Fragile X research funding and improved knowledge and care as a direct result of our advocacy efforts over more than two decades!