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
Save the Date: Wednesday, September 17, 2025
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.
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.
Check out our previous Advocacy newsletters.
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.
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.
Want to reach out to your representative about Ataxia initiatives? Click the links to below to find contact information.
2024 United Against Ataxia Hill Day – September 25th – www.ataxia.org/2024HillDay/
International Ataxia Awareness Day – www.ataxia.org/international-ataxia-awareness-day/
Rare on the Road Leadership Tour – everylifefoundation.org/rare-on-the-road/
Rare Disease Day – rarediseases.org/rare-disease-day/
Abilities Expo – www.abilities.com/expos/
Rare Across America – rareadvocates.org/voter-voice
Global Genes RARE Patient Advocacy Summit – globalgenes.org/event/patient-summit/
NORD Rare Diseases Summit – rarediseases.org/summit-overview/
Rare Disease Week on Capitol Hill – rarediseases.org/rare-disease-day/
Undiagnosed Day – rareundiagnosed.org/april-29th-is-undiagnosed-rare-disease-day/
National Disability Independence Day – July 26th – www.nationaldaycalendar.com/national-day/national-disability-independence-day-july-26
The following are issues that NAF is following. Click the title of any issue to learn more.
118th Congress
Federal Aviation Reauthorization Act – Passed!
Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (S.526/H.R. 4472) – Take Action
Safe Step Act (S. 652/H.R. 2630) – Take Action
Creating Hope Reauthorization Act (H.R. 7384/ S.4583)– Take Action
Accelerating Kids’ Access to Care Act (H.R. 4758/S. 2372)– Take Action
Access to Genetic Counselor Services Act (H.R. 3876/S.2323)– Take Action
NIH Clinical Trial Diversity Act (H.R. 3503/S. 1701)– Take Action
Air Carrier Access Amendments Act (H.R. 1267/S.545)
The Conrad State 30 and Physician Access Reauthorization Act (H.R. 4942/S.665)
Protecting Healthcare for All Patients Act (H.R. 485)
Retaining Access and Restoring Exclusivity (RARE) Act (H.R. 7383/S. 1214)
HELP Copays Act (H.R. 830/S. 1375)
Protecting Rural Telehealth Access Act (H.R. 3440/S.1636)
Safe Interactions Act (H.R. 3550/S. 1731)
Medicaid VBPs for Patients (MVP) Act (H.R. 2666)
Accelerating Kids’ Access to Care Act (S. 2372/H.R. 4758)
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 https://cdmrp.health.mil/funding/prmrp.
Rare Disease Congressional Caucus
Neuroscience Congressional Caucus
The Congressional Caucus for Social Determinants of Health
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 naf@ataxia.org.
Check out some of our latest blogs about our Advocacy efforts below!
Session focused on the importance of funding research and approving new treatments for rare diseases, especially those with no FDA-approved treatment options like Spinocerebellar Ataxia (SCA) Minneapolis, MN (November 19, Read More…
This designation is important to raising awareness of ataxia, ataxia research, and the search for a cure. Minneapolis, MN (September 20, 2024) – The National Ataxia Foundation (NAF) and the Read More…
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 25th! Advocates will have Read More…
According to the National Council on Independent Living, Centers for Independent Living (or CILs) are community-based, cross-disability, non-profit organizations that are designed and operated by people with disabilities. Kory Macy, Read More…
Author: Mary Choi Smith, Community Member Aspiring to make a positive difference, no matter how small, has always been important to me. I’ve known about my SCA6 for about 5 Read More…
Last month we asked for your feedback about the FDA’s decision to refuse to file Biohaven’s NDA for troriluzole. More than 3,000 people stepped up to make their voices heard! Read More…
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.
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
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