My Experience at Advocacy Day
Jaleesa Holden, NFXF Communications Manager, shares her experience as a first-time advocate at NFXF Advocacy Day 2023.
My Fragile X Advocacy Journey
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
Gregg Harper Reminds Us of the Importance of Year-Round Advocacy
Former Congressman and Fragile X Dad, Gregg Harper Reminds Us of the Importance of Year-Round Advocacy.
In-District Advocacy Opportunity with Rare Disease Legislative Advocates
It's that time of year! Join other rare disease advocates for in-district meetings with your Congress members and staff. You can help represent the Fragile X community!
The ABLE Employment Flexibility Act
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
An update on our advocacy efforts, including Advocacy Day 2022 and key legislation we are currently supporting.
Advocacy Day Social Story
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 are Federal Budgets and Why They Matter
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.
What Does a New Congress Mean for Advocacy
As the Biden Administration takes office and Congress switches control, what does it mean for NFXF Fragile X Advocacy efforts?
Fragile X Advocacy in 2021
Gregg Harper discusses NFXF advocacy successes from 2020, 2021 Advocacy Day, and more.
Camping and Fragile X
Because of the hard work of NFXF advocates over the past 20 years, decision-makers in Congress know what Fragile X is. Being present, persistent, and problem-solving is what gets things done in Congress.
Congress Supports Fragile X Research and Awareness
In March, over 150 NFXF Advocates descended onto Capitol Hill to once again advocate for Fragile X and raise awareness among Congress. A top ask is to join efforts to support Fragile X programs at [...]
FY18 CDC Funding
The President's budget cuts CDC funding for Fragile X research and awareness. Rep. Tom Cole (R-OK-4) and Sen. Roy Blunt (MO) oversee this funding and are working on the bill now! Contact their offices to [...]