NFXF Advocacy Day

Advocacy Day brings together families, self-advocates, siblings, caregivers, clinicians, and researchers united in advocating for the Fragile X community and advancing our collective Asks.

If you join us for Advocacy Day, the day on the Hill can be an active and sometimes unpredictable experience. You have the option of taking a bus with fellow Advocates from the hotel to the Hill. We will take a group photo on the Capitol steps — rain or shine! From there, meetings begin.

Be prepared for:

• You may walk long distances between buildings.
• There may be times when you need to wait in security lines or outside of offices.
• Busy, crowded, and noisy hallways, especially when many groups are visiting.
• Short, fast-paced meetings, sometimes held in small rooms or even in the hallway.
• Sharing your story with staff or Members who may ask follow-up questions.

While many participants find the experience empowering, this environment may be challenging for some. We encourage individuals and caregivers to consider these factors when deciding whether attending advocacy day is right for you.

Advocacy doesn’t only happen on Capitol Hill.

You don’t need to travel to Washington, DC, or be a policy expert to make a difference. Here are practical ways to take action from anywhere:

Meet with Lawmakers Locally: During recess, members of Congress return to their home districts. Request a meeting at their local office to share your story and highlight how Fragile X impacts your family.

Bring your State Fact Sheet and the NFXF Federal Research Funding & Legislative Policy Priorities as meeting aids and leave behinds.

Attend Local Events: Sign up for your legislators’ newsletters to learn about town halls, festivals, and community events they may be attending. These are great opportunities to raise awareness and build relationships.

Bring Fragile X Awareness Cards to share.

Invite Lawmakers to a Community Event: If you’re hosting, organizing, or involved in a local program, such as a school activity, therapy session, or support group, consider inviting your legislator. Seeing the impact of Fragile X firsthand can leave a lasting impression.

Respond to NFXF Call-to-Action Alerts: When important legislation is introduced, a quick email or call can help ensure the Fragile X community’s needs are considered.

Regularly Update Your Legislators: Email or call to share important updates about Fragile X; a short, friendly message makes a difference. You are developing a relationship, and it’s nice to check in to share without making an ask.

Include the latest NFXF Advocacy Newsletter to keep them informed.

This information on practical ways to take action from anywhere can also be found in the June 2025 NFXF Advocacy Newsletter.