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Bill Nye the Science Guy is speaking at the 2024 Annual Ataxia Conference! Register now.  LEARN MORE!

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NAF Honors Community Members for Their Achievements

Each year on the final night of the Annual Ataxia Conference we honor members of the Ataxia community for truly standing out in the field of Ataxia research or awareness. We want to congratulate this year’s awardees and thank them for their dedication and achievements to the Ataxia community!  Check Read More…

2023 Funded Research

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…

Retired Green Beret Veteran Raising Awareness for Ataxia

Mike De Rosa, a 23-year Green Beret Special Forces Veteran, is set to hike Mount Kilimanjaro in October to raise awareness for Ataxia. Mike, a North Carolina native, entered the United States Army in June 1982, immediately after finishing High School. Eyes set on joining the Special Forces group, he served Read More…

FDA Approves First Treatment for Friedreich’s Ataxia

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…

Advancing Research by Joining the CoRDS Patient Registry

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…

Day Undefined Partners with NAF

We’re excited to announce our partnership with Day Undefined! Our members can look forward to exclusive new resources created for the Ataxia community. Day Undefined, a company founded by two members of the NAF community, will bring you a new marketplace of accessible items for people with Ataxia, webinars, and Read More…

NAF is Seeking a Public Policy & Advocacy Intern

NAF is seeking a motivated law/pre-law school or public policy graduate/undergraduate student for a June 17 – October 15, 2024, Public Policy & Advocacy Internship. The internship will provide students with the opportunity to learn about federal and state rare disease patient advocacy, research development and health policies while developing Read More…

NAF Announces New Ataxia Centers of Excellence Program

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…

NAF Announces First International Site for the CRC-SCA

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…

The Difference Between Observational and Interventional Studies

There are two main categories of human clinical trials: (1) observational studies, and 2) interventional studies. Both types of clinical studies are essential to developing new therapies for rare diseases like Ataxia. There are multiple trials taking place right now for Ataxia. In this PrepRARE article, learn a little more Read More…

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