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Bill Nye the Science Guy is speaking at the 2024 Annual Ataxia Conference! Register now.  LEARN MORE!


Amplifying the voice of the Ataxia community


Advocating for those affected by Ataxia is an important part of our mission at NAF. We are providing community members with more opportunities to get involved. Advocacy activities will expand our partnerships with other organizations and policy makers to help make a difference for people affected by Ataxia. Involvement in advocacy gives us a way to get your stories to policy makers and pharmaceutical companies to grow awareness, accelerate drug development, and ensure access to care and treatment services

United Against Ataxia Hill Day

5th Annual United Against Ataxia Hill Day

Wednesday, September 20, 2023

Thank you to all of our amazing advocates! 164 advocates, from 33 states, educated lawmakers on ataxia during 86 Congressional meetings. They urged action in funding research programs (CDMRP, NIH, & FDA) and legislation which would expedite treatments (Federal Aviation Act Reauthorization, the BENEFIT Act, & the RARE Act). The success of these meetings was a direct result of the time and commitment each of you took to prepare and deliver our important message.  

Our individual and combined voices were heard! You helped to raise awareness about the journey of being diagnosed and living with Ataxia, and the search for treatments! It will be your story that your Member thinks of when reviewing future legislation and its impact on research. It is no longer theoretical, now it affects a constituent they know.  

The primary ask, the continued inclusion of “Hereditary Ataxia” in the CDMRP/PRMRP, was well received. Appropriations requests were made last spring for FY24, and the Senate has already included the necessary language in their draft report. Offices overwhelmingly expressed support in passing this initiative. Furthermore, most encouraged us to reach out to them when FY25 appropriations requests open. That is huge! It is a clear example of how you are helping to grow ataxia champions on Capitol Hill. Job well done team! 

Visit to learn more! 

Become an Ataxia Advocate

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 Make sure to select “Advocacy” in the Member Interests section. 

Past Advocacy Newsletters

Check out our previous Advocacy newsletters. 

Advocacy Training

Your voice matters. Patients, their families, and their caregivers have the power to help change public policy to improve the lives of people living with Ataxia. Knowing where to start to get involved with advocacy work can be hard. NAF is here to help! Our United Against Ataxia Hill Day Training video is a great start! 

Our advocacy partner, EveryLife Foundation for Rare Diseases, also offers a great resource for learning about the legislative process and how to contact your representatives. Check out their advocacy toolkit.

Help Us Declare September 25 – IAAD from Coast to Coast 

You can help us get September 25th – International Ataxia Awareness Day (IAAD) declared across the country. Contact your mayor or governor to issue an IAAD Proclamation or your state legislators to pass an IAAD Resolution. The Advocacy Toolkit provides an example proclamation, resolution, and letter to your representative. Contact NAF if you pursue a resolution or proclamation so that we can coordinate individual efforts and highlight those that are obtained.

Find Your Local Representative

Want to reach out to your representative about Ataxia initiatives

Congressional Representatives


Advocacy Events

2024 United Against Ataxia Hill Day – September 25th –

International Ataxia Awareness Day –

Rare on the Road Leadership Tour –

Rare Disease Day –

Abilities Expo –

Rare Across America –

Global Genes RARE Patient Advocacy Summit –

NORD Rare Diseases Summit –

Rare Disease Week on Capitol Hill –

Undiagnosed Day –

Legislative Issues

The following are issues that NAF is following. Click the title of any issue to learn more.


National Ataxia Awareness Day Resolution
NAF and FARA jointly advocate for a Senate Resolution recognizing September 25 as “National Ataxia Awareness Day.” Designating a National Ataxia Awareness Day highlights the impact of ataxia on individuals and their families within the United States and helps accelerate funding, development, and access to effective treatments. This designation occurs yearly. Prior co-sponsors for the resolution: Senator Cindy Hyde-Smith (R-MS) (2023, 2022, 2021, 2020); Senator Debbi Stabenow (D-MI) (2023,2022); Senator Shelley Moore Capito (R-WV) (2023, 2022); Senator Chris Murphy (D-CT) (2023, 2021); Senator Elizabeth Warren (D-MA) (2020). 2023 National Ataxia Awareness Day Senate Resolution (S.Res. 507)

Congressionally Directed Medical Research Program (CDMRP)
Hereditary Ataxia has been added as an eligible condition under the Peer Review Medical Research Program (PRMRP), a category of the CDMRP, which will allow Hereditary Ataxia researchers access to a new funding opportunity. This year our goal is to secure continued funding to include all Hereditary Ataxias in the CDMRP. The PRMRP program announcements and submission instructions are located at

Rare Disease Congressional Caucus 

Neuroscience Congressional Caucus

NIH BRAIN Initiative

The Congressional Caucus for Social Determinants of Health

Advanced Research Projects Agency for Health (ARPA-H)  

Act for ALS  

Share Your Story

Let’s show the world the incredible people and families that are a part of the Ataxia community! Please share your story with us to add to our Member Stories page. Email us at  

Check out some of our latest blogs about our Advocacy efforts below!

Greg Gray

I was excited to participate in the 2022 Hill Day advocacy because it is to raise awareness of Cerebellar Ataxia by congressional leaders that hopefully endorse funding in the medical Read More…

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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

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