For nearly 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.
The newsletter contains information about our 20th NFXF Advocacy Day (February 2024), advocacy accomplishments, RARE Across America 2023, and legislation we are monitoring.
Read the November 2023 issue of the Fragile X Advocacy Newsletter
We encourage you to communicate with your members of Congress offices throughout the year as a way to inform, educate, and update them on topics you have previously discussed. Share the latest version of the newsletter as a natural follow-up!
Here are a few ways you can keep in touch with your Congress member’s offices throughout the year:
- Make an appointment in your local in-district office to provide an in-person update. Meeting at the in-district office is a great opportunity to include your family in your visit! Bring a printed copy of the newsletter to share with the staff. We encourage you to follow up your visit with an email or better yet, a handwritten note!
- Check with the local or in-district office if there are any upcoming events. Events like town halls, festivals, safety fairs, mobile office hours, etc. are great opportunities for you and your family to connect with your members or staff.
- Connect virtually! If an in-person visit is not possible, email the newsletter to your contacts at the office, along with an update about you and your family since you last met. You may still have contact information for staffers from your previous interactions.
See all issues of the NFXF Advocacy Newsletter
Learn more about NFXF Advocacy.
Thank you for advocating! YOU are making a difference!
