Bill Nye is back in his lab with NAF and Biogen—breaking down the science of Friedreich Ataxia in a new video series. WATCH NOW
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…
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…
NAF to Award $735,000 in Ataxia research grants in 2023 There was a robust pool of applicants for NAF research grants in 2023. It demonstrates the energy to accelerate treatment development in this space. We were thrilled to see so many studies with high scientific merit! These grants allow Ataxia Read More…
The FDA recently the FDA announced approval for SKYCLARYS (omaveloxolone) for the treatment of Friedreich’s Ataxia. This is the first and only FDA-approved prescription medicine for Friedreich’s Ataxia. NAF is thrilled about this announcement and proud to have been involved in the process, from clinical trial recruitment to educating our community about Read More…
The Coordination of Rare Diseases at Sanford (CoRDS) coordinates the advancement of research into 7,000 rare diseases via data sharing and study recruitment. CoRDS works with advocacy groups such as the National Ataxia Foundation, individuals who have a diagnosis of any form of Ataxia, and researchers who are studying various Read More…
In our continued commitment to improving clinical care and accelerating treatment development, we’re proud to announce NAF’s new Ataxia Centers of Excellence (ACE) designation! The ACE program will recognize exceptional centers providing comprehensive care and services for individuals affected by Ataxia and their families. In addition to providing expert clinical Read More…
We’re excited to announce the first international site for the Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) natural history study! NAF is proud to partner with Ataxia Canada and the Centre hospitalier de l’Université de Montréal in Montreal, Québec to provide the Ataxia community with a new Read More…
We’re excited to announce that NAF will award more than $850,000 in Ataxia research grants this year! This year’s funded projects will support research on 8+ genetic forms of Ataxia, from the most common to some of the rarest, as well as address shared disease pathways that could provide insights Read More…
DISCLAIMER: The information provided in this article is for informational use only. NAF encourages all readers to consult with their primary care provider, neurologist, or other healthcare provider about any advice mentioned. Deciding whether to donate cerebral spinal fluid (CSF) is a very personal, but impactful decision. In the video Read More…
