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Advocacy

2024 United Against Ataxia Hill Day

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

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

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

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

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

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

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

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…

Bridget George

Discovering that you and your family have or are at risk for a rare genetic disease, such as Ataxia, in my case SCA7, can be pretty devastating. Knowing there is no cure, no approved treatments to slow the disease course, and that it is relentlessly progressive can feel overwhelming and Read More…

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