Check out our latest edition of the Fragile X Advocacy Newsletter!
For over 20 years, advocates have joined voices promoting Fragile X awareness, advocating for Fragile X research funding and legislation that will improve the lives of those impacted by Fragile X.
This newsletter shares information about our 21st NFXF Advocacy Day (February 2025), the legislation we support and monitor, RARE Across America 2024, and more.
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. Share the latest version of the newsletter—it’s a great way to follow up naturally!
Staying Focused on Fragile X Advocacy
Fragile X advocacy involves sharing your experiences, including your challenges, and proposing meaningful ways to support the Fragile X community with your Members of Congress. The current political landscape can make it difficult to stay focused on our goals of improving lives and creating opportunities for the entire Fragile X community, but we know you can do it!
The NFXF is committed to advancing advocacy priorities, initiatives, and ‘Asks”. Fragile X advocacy is non-partisan, and the progress made over the past 20 years is thanks to dedicated advocates who have shared their successes and challenges. We will continue to be a consistent voice in this important space.
Remember, every interaction counts, and your voice matters! Keep up the great work advocating for Fragile X.
Check out our previous editions of the Fragile X Advocacy Newsletter:
- Fragile X Advocacy Newsletter – July 2023
- Fragile X Advocacy Newsletter – November 2023
- Fragile X Advocacy Newsletter – June 2024
Learn more about NFXF Advocacy: https://fragilex.org/get-involved/advocacy/
Thank you for advocating! YOU are making a difference!
Save the Date!
We hope you will join us for the 21st NFXF Advocacy Day in Washington, D.C., February 24-25, 2025.
More details will be shared later this year.
about
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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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!