Advocacy Archives

National Ataxia Foundation Hosts Congressional Briefing with Bill Nye, The Science Guy, to Raise Awareness of Ataxia and the Impact on Patients and their Families

November 19, 2024

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, 2024) – Today the National Ataxia Foundation (NAF) partnered with members of Congress to host an informational meeting for legislators, Read More…

Congressional Resolution Passes to Designate September 25 as “National Ataxia Awareness Day”

September 20, 2024

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 Friedreich’s Ataxia Research Alliance (FARA) are pleased to announce that Congress has once again designated September 25 as National Ataxia Read More…

2024 United Against Ataxia Hill Day

July 21, 2024

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 the opportunity to attend virtual meeting with members of congress and their staffers to tell their stories and relay the Read More…

Intro to Centers for Independent Living

April 9, 2024

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, a person with Ataxia who uses a wheelchair, explains what CILs are and why they may be helpful to people Read More…

My Rewarding Hill Day 2023 Experience

December 13, 2023

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 years, first suspecting I had it because of balance issues that started in my 50’s. My father had SCA6, as Read More…

Community Response Regarding Troriluzole Delivered to FDA

September 19, 2023

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! 97% of respondents agree that the FDA should apply regulatory flexibility and accept the NDA filing for troriluzole for a Read More…

Tell Us Why You Think Ataxia Deserves Regulatory Flexibility

August 17, 2023

Thank you for submitting your comments for the FDA! NAF gathered feedback from the Ataxia community to submit to the FDA. We’re concerned with the FDA’s decision to refuse to file Biohaven’s new drug application (NDA) for troriluzole without a full review of the clinical trial results. Read our full statement Read More…

Advocating for Ataxia: My Virtual Experience on Hill Day

July 27, 2023

Author: Mark Hazlin, NAF Board Member In 2021, as I logged into the virtual platform for the National Ataxia Foundation (NAF) Hill Day for the first time, I was nervous. As a PR person in Washington, DC, I’ve been to these advocacy events before. I have a good idea of Read More…

2023 United Against Ataxia Hill Day

July 19, 2023

Annual United Against Ataxia Hill Day was on September 20, 2023. At this virtual event, Ataxia advocates spoke with their Congressional Members to help them fully understand what Ataxia is and what legislative action is needed. 5th Annual United Against Ataxia Virtual Hill Day Was a Huge Success Virtual Event Read More…

Greg Gray

July 19, 2023

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 research of Cerebellar Ataxia. I didn’t know what to expect when Hill Day 2022 arrived. There were 4 of us to talk Read More…

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