Bill Nye the Science Guy is speaking at the 2024 Annual Ataxia Conference! Register now. LEARN MORE!
Taking part in research is one way to help accelerate the development of treatments for ataxia. Some people like playing an active role in improving our understanding of ataxia by participating in clinical trials and other research studies. However, participating in research is a deeply personal choice. There are a Read More…
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…
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…
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…
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…
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…
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…
What Types of Ataxia Can Be Identified Through Genetic Testing? Genetic testing can identify the specific type of hereditary Ataxia you have, as Ataxia can be a symptom of various genetic conditions. Based on your clinical examination, your genetic counselor will determine the type of genetic test that is most Read More…
How Do I Tell My Loved Ones About My Genetic Testing Results? The decision to share, or not share, your genetic test results with loved ones is your personal choice. When, with whom, and how to share your results is completely up to you. It is normal to feel worried. Read More…
What Are the Most Common Ways to Give a DNA Sample? Since our DNA is in every single cell of our body, there are many ways to provide a DNA sample for genetic testing. The genetic test most appropriate for you will have requirements on what types of samples are Read More…
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