The Ataxia Community Comes Together in Orlando April 9–11, 2026 for the Annual Ataxia Conference! LEARN MORE
NAF is hiring a full time Clinical Research Coordinator. This person will be responsible for supporting the Clinical Operations Branch of the Research Department. This position primarily focuses on coordinating the NAF-sponsored Natural History Study titled Clinical Research Consortium for the Study of Cerebellar Ataxias (CRC-SCA). They will independently manage Read More…
While some begin their careers with a specific specialization – ready to focus on making a difference in a certain field – Dr. Tetsuo Ashizawa’s path to becoming an internationally acclaimed physician scientist specializing in Ataxia was anything but predetermined. Born in Tokyo in 1948, Dr. Tee, as he prefers Read More…
The following is a high-level overview of the Katie Campbell CRC-SCA Face-to-Face Meeting held from September 11-13, 2023, in Bloomington, Minnesota. This meeting focused on logistics and discussion of the ongoing Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) Natural History Study. Session 1: CRC-SCA Progress and Introductions Read More…
This is a periodic newsletter for Ataxia clinicians to keep them up-to-date on patient resources and other medical news. To begin receiving this newsletter, join as a professional member of NAF at www.ataxia.org/JoinNAF. Hello from NAF’s Clinical Services Team If you are new here, welcome! We hope you are new 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…
My name is Tanoa and I am NAF’s Social Media Coordinator. I am proud to announce that I will be climbing Mount Kilimanjaro alongside Mike De Rosa this October! I will be there to document the journey through pictures and video and support Mike’s efforts as a compatriot on his Read More…
Step into the world of Mary Hogan, where genealogy goes far beyond a mere hobby and leads to learning about a pervasive genetic disorder called SCA27B. A Family Affected – The “Darby Glide” Many of us have logged onto Ancestry.com and tinkered around for a few hours. We’ve seen the 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…
Thank you for submitting your comments for the FDA! Troriluzole, an experimental drug being developed by Biohaven, completed Phase 3 clinical trials last year. While the primary endpoint assessing benefit across all Spinocerebellar Ataxia (SCA) types was not met, Biohaven believes the results show benefit among participants with SCA Type 3 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…
