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
The Voice of the Patient Report (PDF) for Polyglutamine Ataxias and DRPLA is now available. This report summarizes information from the Externally-Led Patient Focused Drug Development (EL-PFDD) meeting we hosted on September 25, 2020. We would like to offer our thanks to the patient panelists, phone callers, and individuals who submitted Read More…
Guest Author: Tasha Kaiser, Clinical Research Coordinator, University of Michigan Hello, with a big friendly wave of the Michigan mitten! My name is Tasha Kaiser, and I am the Clinical Research Coordinator for the University of Michigan Ataxia studies. I know that so many of you in the Ataxia community Read More…
Author: Sue Hagen, Research Services Director I heard a story about a father and his son out on a bike ride who came upon a drainage tunnel that ran underneath the highway. They decided to get off their bikes and go exploring. They entered the tunnel and started walking when Read More…
Guest Author: Dr. Pravin Khemani Swedish Neuroscience Institute; NAF Medical and Research Advisory Board Member Hi folks! Social distancing is not social disengagement, so please stay as connected with your near and dear ones as possible…safely of course. Recruit your children or your tech-savvy friends and family to show you Read More…
We’re excited to announce that NAF will award $940,000 in Ataxia research grants this year! NAF’s Board of Directors approved funding for 25 Ataxia research grants in 2020. Nearly 60 applications were reviewed by a team of the world’s top Ataxia researchers. They selected the highest quality Ataxia research grant applications for Read More…
Working with your doctor to obtain a diagnosis can be difficult, especially with a rare disease. Medical history, family history, and a neurological evaluation are used to diagnose Ataxia. Various blood tests may also be used to rule out other disorders. Your doctor may recommend genetic testing if a hereditary Read More…
We’ve been talking a lot lately about Ataxia clinical trials. But what is a clinical trial? Should you sign up to participate when there is one available for your type of Ataxia? What happens during a clinical trial? Learn everything that you need to know with this webinar: Clinical Trials Read More…
Author: Kelsey Trace, NAF Research Associate It was an exciting couple of days in Minnesota when prominent Ataxia clinical researchers and research coordinators met in Minneapolis in September for the annual Katie Campbell Clinical Trial Readiness Conference. This conference focuses on the work of the Clinical Research Consortium for the Read More…
Photo: Andrew Rosen (right) presents a Certificate of Appreciation at the Orange County Walk N’ Roll to Cure Ataxia Author: Andrew Rosen, Executive Director The life of an Executive Director at a nonprofit like NAF is filled with many different tasks. While I enjoy coming to the office and working Read More…
Author: Sue Hagen, Patient and Research Services Director A Community Mobilized Toward Treatments One of the goals of a disease-specific patient organization is to provide resources that will help in the discovery of treatments for their disease. And that is absolutely true of the National Ataxia Foundation. We want treatments Read More…
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