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BREAKING NEWS: FDA Approves First Treatment for Friedreich’s Ataxia. LEARN MORE!

National Ataxia Foundation

2023 AAC


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…

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…

National Ataxia Foundation

NAF Recognizes the Gordon and Marilyn Macklin Foundation

In 2018, the Gordon and Marilyn Macklin Foundation and NAF partnered on a critical project for the Ataxia community: A relaunch of the Clinical Research Consortium for the Study of Cerebellar Ataxias, better known as the CRC-SCA Natural History Study. The CRC-SCA is an ongoing clinical study that aims to Read More…

National Ataxia Foundation

2022 NAF Funded Research

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…

All About Cerebral Spinal Fluid (CSF) Donation

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…

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