Bill Nye is back in his lab with NAF and Biogen—breaking down the science of Friedreich Ataxia in a new video series. WATCH NOW
Bill Nye is back in his lab with NAF and Biogen—breaking down the science of Friedreich Ataxia in a new video series. WATCH NOW
Advocating for those affected by Ataxia is an important part of our mission at NAF. Advocacy expands our partnerships with organizations and policy makers to make a difference for people affected by Ataxia. Your involvement allows us to share your stories with policy makers and pharmaceutical companies to build awareness, accelerate drug development, and ensure access to care and treatment services.
Advocating for Ataxia is a crucial part of NAF’s mission- and you can join us! Watch this video to hear from your fellow community members about why they advocate and the impact our advocacy has had. Your involvement can raise awareness for Ataxia and move the needle on policy issues that are important to our community!
Join us in opportunities to meet with members of Congress! The focused attention of a policymaker or a congressional staffer is precious. Most meetings last only 15 – 30 minutes so it’s important to make the most of every second. This video will equip you with the knowledge to optimize that time.
Thank you to everyone who participated in Hill Day this year! We are grateful to have such a passionate community of people who got involved in advocating for Ataxia with us.
The event was a huge success, with 169 advocates participating in 99 meetings with Senate and House of Representative offices from 38 states. We advocated for research funding, the continued inclusion of Hereditary Ataxia in the CDMRP, and legislation to incentivize rare disease treatment development and improve patient access to care. There was a lot to cover in these meetings, so thank you to our advocates for learning about all of these complex topics. This event would not have been possible without your hard work.
Visit www.ataxia.org/advocacy/hillday to learn more and to get ready for Hill Day 2026!
Want to stay in-the-know about advocacy issues? We send a quarterly advocacy newsletter and periodic emails to those on our advocacy email list about current legislative issues and things you can do to get involved. To join, become a member of NAF or update your membership information at www.ataxia.org/JoinNAF. Make sure to select “Advocacy” in the Member Interests section.
You can help us with our efforts by letting us know about legislative issues that you would like us to be aware of. You can also inform us about national or state legislators that you are in regular contact with or know personally. Email NAF’s Community Program and Services Director, Lori Shogren, at lori@ataxia.org.
