NFXF Advocacy Day

Volunteers, including self-advocates, gather on the steps at Capital Hill for a day of advocacy.

The pillar of our advocacy work is Advocacy Day. For over 20 years, we have gathered in Washington, D.C., every spring in a concerted, joint effort to raise awareness of Fragile X in Congress and ask for research funding and policies that would provide the opportunity for a better life for those living with Fragile X.

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    Next Advocacy Day is …

    February 23-24, 2026

    Mark your calendars!

    NFXF Advocacy Day is an annual event where members of the Fragile X community come together in Washington, DC, and meet with members of Congress and their staff.

    Advocates share their stories, educate lawmakers, raise awareness, and present our collective Asks, which include continued and increased federal research funding as well as key policy and legislative priorities that support individuals and families living with Fragile X. We are the dedicated voices for Fragile X. If we don’t advocate, no one else will.

    Because of the long-standing commitment of the Fragile X community, more than $725 million in federal research funding has been invested in Fragile X to date. The strong reputation our community has built on Capitol Hill has made this possible. By sharing your voice, your experiences, and the real-world impact of federal funding and policy decisions, you help continue this momentum.

    The NFXF is a non-partisan organization, and Advocacy Day focuses on educating and empowering all lawmakers to support the Fragile X community.

    Frequently Asked Questions

    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.

    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.

    What to expect:

    • 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 Congress 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. Information on practical ways to take action from anywhere can be found in the June 2025 NFXF Advocacy Newsletter.

    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.

    What Does Participation Look Like?

    It is easy to think your voice doesn’t matter — it does.  Members of Congress listen to voices from home. They know you are a voter and sharing personal stories about Fragile X is an empowering and effective way to raise awareness, educate, and advocate for continued funding and supportive policies. It can drive change, inspire compassion, understanding, and action that ultimately benefits the entire Fragile X community. This makes a difference!

    Just remember that yours is the loudest, most effective voice, which makes it critical to attend meetings with members of Congress and their staff. You don’t have to be eloquent or perfect — you just have to be honest, respectful, and solution-oriented. Your participation moves the needle for more research funding and policies that help families impacted by Fragile X have a better life.

    We take care of all of the details! Here’s what you can expect:

    Training

    You will participate in a combination of online, self-paced trainings ahead of time; then group training and preparation in person at the hotel prior to meetings. We also host a virtual Zoom meeting earlier in the month of February for new or returning advocates.

    New to advocacy? Our partner, the Everylife Foundation, has a comprehensive glossary of policy and advocacy terms we work from.

    Samples of state fact sheets.Materials

    You receive all of the materials you’ll need, including state fact sheets that show the number of affected individuals — their constituents — currently residing in each state.

    Meetings

    Your meetings are scheduled for you and everything is coordinated with other advocates from your area. Plan to be in-person for your meetings (note that there will be scholarships available).

    Asks

    Each year we prioritize Fragile X research funding and policies that facilitate treatment development and create opportunities for better lives for those living with Fragile X and other intellectual and developmental disabilities.

    The bottom line? Don’t be nervous — we will help you each step of the way!

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    The Fragile X Advocacy Newsletter

    Check out our Fragile X Advocacy Newsletter to learn more about what we do every year on Advocacy Day:

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    Subscribe to Advocacy News

    Questions?

    We’re here to help, please email the NFXF Team at advocacy@fragilex.org.

    Related Resources

    Glossary of Policy and Advocacy Terms

    Join our private Facebook group for advocates

    Donate to the NFXF