Fragile X Advocacy Newsletter – April 2025
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Join us for the NFXF Advocacy Day 2025. This annual in-person event will bring together families, self-advocates, siblings, caregivers, doctors, and researcher who are a collective voice dedicated to elevating awareness, educating, and showcasing actionable ways to support the Fragile X community.
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Dillon Kelley, Advocacy Ambassador to the NFXF Board of Directors shares his experience at the 2024 NFXF Advocacy Day.
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
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
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.
An update on our advocacy efforts, including Advocacy Day 2022 and key legislation we are currently supporting.
Gregg Harper discusses NFXF advocacy successes from 2020, 2021 Advocacy Day, and more.