Next Advocacy Day is …
February 23-24, 2026
Mark your calendars!
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
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.
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
The Fragile X Advocacy Newsletter
Check out our Fragile X Advocacy Newsletter to learn more about what we do every year on Advocacy Day:
Subscribe to Advocacy News
Questions?
We’re here to help, please email the NFXF Team at advocacy@fragilex.org.