Check out our latest edition of the Fragile X Advocacy Newsletter!
For 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 details and updates on the ‘Asks’ from our 20th NFXF Advocacy Day (February 2024), advocacy accomplishments, legislation we are monitoring, and RARE Across America 2024 registration.
Staying in touch with your Members of Congress (MOC) 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!
Here are some easy ways to stay connected with your Member’s offices:
- Schedule a Local Visit: Arrange a visit to your local in-district office for a face-to-face update. It’s a wonderful chance to involve your family too! Bring along a printed copy of the newsletter to share with the staff. And after your visit, consider sending a friendly email or even a handwritten note to say thanks. Register by July 12, 2024 to participate in the RARE Across America 2024.
- Attend Events: Keep an eye out for any upcoming events hosted by the local/in-district office. Town halls, festivals, safety fairs, and mobile office hours are great opportunities for you and your family to meet your Member and their staff in person.
- Connect Online: If visiting in person isn’t possible, don’t worry! You can still stay in touch virtually. Email the newsletter to your contact(s) at the office, and include a quick update about you and your family since you last connected.
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:
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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Fragile X Advocacy Newsletter – October 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
A Reflection on the CEO Commission’s 2024 Hill Day
NFXF Executive Director, Hilary Rosselot, and Advocacy Ambassador, Dillon Kelley, attended the CEO Commission for Disability Employment’s Employment Summit and Hill Day in September 2024. It was an inspiring, action-packed few days, and they are excited to share more about their experience and why it matters to the Fragile X community.