If you have been to Advocacy Day, you know it is not only a critical time to raise awareness of Fragile X among our nation’s decision makers and advocate for research and public policies that improve the lives of those living with Fragile X, but it is a great time to meet other Fragile X families and to renew old friendships.
NFXF Advocates are the voice for Fragile X and they have a track record of success:
- Hundreds of millions of dollars for Fragile X research
- Inclusion of Fragile X in the DOD’s Congressionally Directed Medical Research Program
- The ABLE Act to provide for tax-deferred savings for disabled individuals
- Amendments to improve the ABLE Act
- RAISE Act to improve government policies for adult caregivers
- A voice on the importance of Medicaid, SSI, and health insurance to families living with Fragile X.
And we are poised for even more this year, including opening research opportunities to translate basic science findings into everyday treatments, incentivize research into drugs for “rare” disorders, and policies to create opportunities for adults living with Fragile X.
Over 100 NFXF Advocates are already registered for Advocacy Day 2018 on March 5-6. Will you join us? Once you get here, we strive to make it as easy as possible on you so you can focus on visiting with families and your advocacy on the Hill. The NFXF sets all of the meetings, trains you, provides an experienced mentor if it is your first time, and more. We even have special training for self-advocates.
We advocate all year long. You can sign up for our STAR Local Advocacy program, update your profile to get alerts for advocacy news, and join our Facebook group. You can also donate to our advocacy efforts, which are an integral part of the NFXF mission and costs are included in our annual budget.
Director of Communications and Government Relations