NFXF Advocacy Day

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.

Table of Contents

    Next Advocacy Day is February 23-24, 2026

    Mark your calendars for our next Advocacy Day — February 23-24, 2026.

    Every year, families, self-advocates, caregivers, siblings, doctors, and researchers come together to advocate for the entire Fragile X community and work toward our collective goals.

    This event is focused on shared priorities and policy initiatives. As a non-partisan organization, we aim to promote a unified message that supports the needs of the entire Fragile X community. Together, we can make a meaningful difference! Learn more about what to expect during this event.

    Learn More About Our 2025 Advocacy Day

    Fragile X Advocacy Newsletter — April 2025
    3 pages,
    Updated 04/01/2025
    News, advocacy accomplishments, Fragile X included in the PRMRP list for FY25, NFXF federal research funding & legislative policy priorities, current topics and legislative priorities, plus legislation we’re monitoring.

    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!

    Here’s a quick look at last year’s Advocacy Day 2024:

    • 150 advocates, including self-advocates, siblings, parents, caregivers, physicians, and researchers
    • 29 states
    • 119 meetings

    Subscribe to Advocacy News

    Questions?

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