by Kristin Bogart
Over the past 19 years, the efforts of NFXF Advocates have helped secure more than $500 million in federal funding for Fragile X research and programming, in addition to many legislative initiatives including the ABLE Act.
2023 Advocacy Day Asks
Each year, we focus on “Asks” that support Fragile X research funding, in addition to policies that improve the status quo and provide opportunities for better lives for those living with Fragile X and other intellectual and developmental disabilities. We choose legislation that is bipartisan and workable.
Here’s what we are asking for this year:
- Support Fragile X research funding for fiscal year 2024 – Between the NIH, the CDC, and the DOD, the Federal government invests over $50M/year in Fragile X research. This varies per year, depending on the research proposals funded following the peer review process. (Learn more about FY23 funding opportunities for research in Fragile X-associated conditions and disorders). Additionally, the CDC’s Fragile X program supports awareness among professionals, published consensus guidelines, and the FORWARD project, which collects data on individuals with Fragile X across the lifespan and makes it available to researchers.
- Support expanded access to telemedicine beyond the pandemic response – The expanded availability of telemedicine is a pandemic positive. In addition to easier access to regular appointments, this would allow every family with Fragile X to access a clinic, as Fragile X clinics are not available in every state. Fragile X has one of the longest standing clinical infrastructures in the U.S. and we still have not met even half the individuals with Fragile X syndrome. Being able to access that expertise without significant travel costs and time helps improve medical care and provides equitable access to all individuals living with Fragile X.
One of the most impactful ways that NFXF Advocates help to advance research funding and legislative initiatives is by telling their story. What is life with Fragile X like, how does it impact your daily life, your family, your profession? THIS is what Members of Congress remember when it comes time to vote for legislation.
The tremendous efforts and dedication by our NFXF Advocates makes an incredible difference in driving Fragile X programming and research at the federal level and creating opportunities for better lives for all those living with disabilities. Thank you to all of our Advocates!