Research

How Does a Clinical Trial Work?

Guest Author: Amber Trzeciak, Cadent Therapeutics Clinical trial phases can be a confusing concept to understand. The purpose of clinical trials is to determine how a drug or device (intervention) will interact with a human being. Trials are regulated by our governmental agency the FDA (US Food and Drug Administration). Read More…

EL-PFDD Meeting

We’re excited to announce that NAF and Cure DRPLA will Host an Externally-Led Patient-Focused Drug Development Meeting for Polyglutamine Spinocerebellar Ataxias and DRPLA! Save the Date! September 25, 2020 10am-3pm EST Virtual Meeting What is an Externally-Led Patient-Focused Drug Development Meeting? An Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting gives the FDA and other Read More…

What’s the Deal with Ataxia Research Right Now?

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…

Light at the End of the Tunnel

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…

8 Things to Do While You Are Social Distancing

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…

2020 NAF Funded Research

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 the world’s top Ataxia researchers. They selected the highest quality Ataxia research grant applications Read More…

Ataxia Genetic Test Options

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…

Clinical Trials in Ataxia: Hope, Opportunity, and Caveats

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…

A Week in the Life of NAF’s Executive Director

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…

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