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.
Join NAF and our partners at FARA in advocating for Ataxia and rare disease related policies during our annual United Against Ataxia Hill Day on September 17th! Advocates will have the opportunity to attend virtual meetings with members of congress and their staffers to tell their stories and relay the importance of supporting NAF’s legislative initiatives.
Save the Date: Wednesday, September 17, 2025
Visit www.ataxia.org/HillDay to learn more!
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.
