Health Insurance, Medicaid, and SSI/SSDI

These are three issues that aren’t going away. They are especially critical for Fragile X families and other families with disabilities, lifelong care needs, etc. To help your members of Congress understand the importance of the programs, we have an email template you can customize with your own situation, story, etc. or you can write your own email. Take a moment to use our new advocacy tool to send an email to all of your members of Congress.

New NFXF Advocacy Tool

The NFXF has a new advocacy tool to make it easier for you to contact your members of Congress. Just moved and still need to register to vote? You can do that here too.

Advocacy Day 2018 – March 5-6

The foundation of our advocacy efforts is our annual Advocacy Day. Around 180 NFXF Advocates, including parents, grandparents, siblings, self-advocates, researchers, and doctors attend to raise awareness of Fragile X in Congress and to advocate for Fragile X research funding (around $40M/year) and policies and programs that create opportunities for those living with Fragile X.

It is more than a critical time to advocate. It is also a great time to connect with other families, researchers, clinicians, and doctors.

We do all we can to make your time enjoyable and productive. We provide all you need, handle the logistics and scheduling, and even feed you.

You can get more details here.


Our advocacy efforts are an integral part of the NFXF mission and costs are included in our annual budget. If you would like to help, there is still time to donate to our Annual Appeal and to include the deduction on your 2017 income taxes. Donate here.