Fragile X Advocacy Newsletter – April 2025
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
ACTION ALERT:
Protect the Department of Education
Action Alert- Protect the Department of Education to ensure continued protections for all students, especially members of the Fragile X community.
Advocate for Fragile X From Home
Advocating from home is a key part of ensuring continued support for individuals with Fragile X. Let’s work together to make our voices heard!
Potential Impact of the Continuing Resolution on CDMRP/PRMRP Funding Opportunties
The Congressionally Directed Medical Research Program could face a 57% reduction in funding with the proposed continuing resolution.
ACTION ALERT:
Advocate for Medicaid and the Fragile X Community
Action Alert- Advocate for Medicaid protection and the Fragile X community.
Fragile X Advocacy Newsletter – October 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Fragile X Advocacy Newsletter – June 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
2024 Advocacy Day Experience – Dillon Kelley
Dillon Kelley, Advocacy Ambassador to the NFXF Board of Directors shares his experience at the 2024 NFXF Advocacy Day.
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 24
Announcing FY 2024 federal research funding opportunities across six award categories available for all Fragile X-associated conditions and disorders.
Fragile X Advocacy Newsletter – November 2023
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
DOD grant awarded for a FXTAS trial
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).
We’re Urging Lawmakers to Support the Accelerating Kids’ Access to Care Act
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.
Fragile X Advocacy Newsletter
Read and share the first edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Rare Across America 2023
Register now to join other rare disease advocates for meetings between August 7th - 18th. Sign up today for Rare Across America!
My Experience at Advocacy Day
Jaleesa Holden, NFXF Communications Manager, shares her experience as a first-time advocate at NFXF Advocacy Day 2023.