Check out our latest edition of the Fragile X Advocacy Newsletter!

For over 21 years, advocates have come together to educate Members of Congress and advocate for research funding and legislation that supports the Fragile X community. We are the dedicated voices for Fragile X—if we don’t speak up, no one else will.

This newsletter shares details about our 21st NFXF Advocacy Day, 2025 NFXF Federal Research Funding & Legislative Policy Priorities, Action Alerts, and more.  

Read the Fragile X Advocacy Newsletter- April 2025

Staying in touch with your Members of Congress throughout the year is a fantastic way to keep them informed and updated on the topics you’ve previously discussed. Sharing the latest newsletter is an easy, natural way to follow up and keep the conversation going.

Staying Focused on Fragile X Advocacy

We understand that at times, advocacy can feel challenging. As a non-partisan organization, the National Fragile X Foundation remains committed to advocating for both Fragile X-specific priorities, initiatives, and broader disability policies that affect our community.

Advocacy is about sharing your real-life experiences—your stories, challenges, and hopes—with Members of Congress. These personal connections help educate lawmakers and foster greater understanding. Your voice is essential in ensuring that the needs of the Fragile X community remain a priority.

As we continue this important work, the NFXF is committed to providing accurate, timely information to support and empower your advocacy efforts. Every interaction—whether it’s an email, phone call, or conversation—can make a difference. Your commitment and voice help move this work forward. The progress achieved over the past two decades is thanks to passionate advocates who continue to speak up and stay engaged.

Check out our previous editions of the Fragile X Advocacy Newsletter:

Learn more about NFXF Advocacy: https://fragilex.org/get-involved/advocacy/

Thank you for advocating! YOU are making a difference!

CT-Western MA Night Out Mar 23

Save the Date!

We hope you will join us for the 22nd NFXF Advocacy Day in Washington, D.C., February 23-24, 2026.

More details will be shared later this year.

about
Missy Zolecki, Director, Community Empowerment

Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.

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  • Older man fist bumping little boy with text "DOD Grant Awarded for a FXTAS Trial"

DOD grant awarded for a FXTAS trial

By |Sep 1, 2023|

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).