NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
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Ataxia doesn’t wait—and neither should treatment. NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA). With an estimated 15,000 people in the U.S. affected by SCA, it’s time for decision-makers to understand the impact Read More…
Guest Author: Linda Chase, Able Hire Entering the political arena can be challenging – especially for individuals with disabilities such as Ataxia. However, your journey can also be an inspiring testament to resilience and dedication. In this guide, we will explore several strategic tips designed to bolster your advocacy and Read More…
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…
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…
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…
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…
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…
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…
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…
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…
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