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).
SIGN THE PETITION
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…
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…
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…
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 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…
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…
Those who follow American football probably already know that the NFL and NFL Players Association recently announced changes to the NFL concussion protocol. That change is bringing awareness to ataxia. Tua Tagovailoa, Quarterback for the Miami Dolphins, was injured during a game on September 25th versus the Buffalo Bills. He 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…
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…
We are both happy (for her) and sad (for us) to announce the retirement of Sue Hagen, Research Services Director. We are deeply grateful for her 15 years of dedication to the Ataxia community. Her fierce advocacy for patient needs and commitment to acceleration of research efforts have been an Read More…
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