PureTech Health has been awarded a DoD grant of up to $11.4 million from the DoD for their trial of LYT-300, oral formulation of allopregnanolone, in people with Fragile X-associated tremor/ataxia syndrome (FXTAS).
The NFXF is one of 215 organizations urging lawmakers to support the Accelerating Kids’ Access to Care Act. Every child deserves the best care—regardless of who they are, where they live, or their family’s income.
Read and share the first edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Register now to join other rare disease advocates for meetings between August 7th - 18th. Sign up today for Rare Across America!
Jaleesa Holden, NFXF Communications Manager, shares her experience as a first-time advocate at NFXF Advocacy Day 2023.
NFXF Advocates head to Capitol Hill to ask for ongoing federal funding for Fragile X research and legislation to support telemedicine
Announcing FY 2023 federal research funding opportunities across six award categories available for all Fragile X- associated conditions and disorders.
NFXF Director of Community Empowerment, Missy Zolecki, shares her recent experience as a consumer reviewer for the Department of Defense Peer Reviewed Medical Research Program
Former Congressman and Fragile X Dad, Gregg Harper Reminds Us of the Importance of Year-Round Advocacy.
The ABLE Employment Flexibility Act (H.R. 4672) permits employers to contribute to an employee’s ABLE account instead of a 401(k) – including an employer’s match. By saving it in the ABLE account it will not adversely affect most means-tested federal benefits.
Paula Fasciano and friends opened Bake Ability so they could give employment opportunities to individuals with intellectual and developmental disabilities.
An update on our advocacy efforts, including Advocacy Day 2022 and key legislation we are currently supporting.
The National Fragile X Foundation joined forces with the new CEO Commission on Disability Employment so we can work together to eliminate barriers to employment for all individuals with a disability.
Our own Jayne Dixon Weber pulled together a social story to use to help you and your self-advocate prepare for the NFXF Advocacy Day on February 24, 2021.
What is the President's budget, is it important for Fragile X advocacy, and how does Fragile X research get funded? These are all answered here.
