Action Alert: Help protect Medicaid, a program that provides healthcare coverage and support services for individuals, including those in the Fragile X 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.
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
We understand the uncertainty surrounding recent developments, especially potential changes to federal funding that could impact the Fragile X community. We closely monitor the situation and continue working with our strategic partners to stay informed.
We are seeing numerous proposed changes this Congress that would have a significant impact on the Fragile X community. It’s more important than ever that your members of Congress hear directly from you — your voice matters.
Ensure continued protection for all students, especially members of the Fragile X community.
The Congressionally Directed Medical Research Program could face a 57% reduction in funding with the proposed continuing resolution.
Reach out to your Members of Congress and stress the critical importance of continued federal support, including NIH funding for Fragile X research.
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.
Dillon Kelley, Advocacy Ambassador to the NFXF Board of Directors, shares his experience at the 2024 NFXF Advocacy Day events.
The most effective way to support someone living with FXS in any setting is to maximize their focus, cooperation, and enjoyment.
The November 2023 issue of the Fragile X Advocacy Newsletter! Please read and share it with your members of Congress!
PureTech Health has been awarded a grant from the DOD for their trial of LYT-300, oral formulation of allopregnanolone, in people with FXTAS.
NFXF board member Jed Seifert represented the NFXF at the CEO Commission’s Hill Day and shared his reflections on this powerful experience.
Red tape should never stand between a child and their treatment. But sometimes, they face burdensome, unnecessary challenges when getting care in another state.
Updates on our 2023 Asks, current letters of support, legislation that has been introduced, and legislation we are monitoring.
Fragile X conditions can be complicated to explain. Here we provide seven basic facts about the biology and genetics of Fragile X to help with understanding.
NFXF Advocates head to Capitol Hill to ask for ongoing federal funding for Fragile X research and legislation to support telemedicine.
NFXF team member Missy Zolecki shares her recent experience as a consumer reviewer for congressionally directed federal funding for Fragile X research.
The cooperative agreement was awarded to Dr Elizabeth Berry-Kravis of Rush University Medical Center by the Centers for Disease Control and Prevention.
Gregg Harper, Fragile X dad to Livingston and a former five-term congressman, gave an inspirational keynote speech to kick off the first two days of the conference.
The NIH is the biggest funder of Fragile X research – around $40M/year. That is why their strategic plan to guide Fragile X research is so important.
Dillon worked on Capitol Hill as an intern for the Committee on House Administration, chaired by Rep. Gregg Harper, whose son also has Fragile X syndrome.