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Advocacy

Amplifying the voice of the Ataxia community

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. 

Become an Ataxia Advocate

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!

What To Expect at a Congressional Meeting

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.

8th Annual United Against Ataxia Hill Day

Are you interested in getting involved with Ataxia advocacy? Join NAF and our partners at the Friedreich’s Ataxia Research Alliance (FARA) in our 8th annual United Against Ataxia Hill Day event on September 23, 2026!
 
Hill Day is a completely virtual opportunity for you to meet with your members of Congress alongside other Ataxia advocates to raise awareness of Ataxia and champion the causes our community cares about. Each year hundreds of advocates across the United States join together- last year we had 169 advocates participate in 99 congressional meetings! This year, we will be advocating for increased federal research funding, the continued inclusion of Hereditary Ataxia in the CDMRP, against new proposed federal grantmaking rules, and in support of legislation to improve rare disease treatment reviews at FDA.
 
Visit www.ataxia.org/advocacy/hillday to learn more and to get ready for Hill Day 2026! 

Join Our Advocacy Email List

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. 

Advocacy Newsletters

Upcoming Events

23 Sep, Wednesday
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25 Sep, Friday
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25 Sep, Saturday
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25 Sep, Monday
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Advocacy Partners

Contact Us

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.

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