The National Ataxia Foundation is dedicated to improving the lives of persons affected by Ataxia through support, education, and research.
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Guest Authors: Sheng-Han Kuo MD, Chen-Ya Yang, MD, MPH, and Geraldine Yu, PT, DPTTechnical Support: Tiffany Chen BS, Johns Hopkins University Ataxia is a neurologic Read More…
Facebook fundraisers make a big difference for us at NAF. More than $200,000 has been raised because people like you took the time to support Read More…
Author: Lori Shogren, Community Program and Services Director NAF partnered with FARA and the EveryLife Foundation for Rare Diseases to bring International Ataxia Awareness Day to Capitol Hill. United Against Ataxia Hill Day Read More…
Author: NAF Support Group Leaders St. Louis Ataxia Support Group Recognized on CBS News for IAAD The St Louis Ataxia Support Group and CBS Channel 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 Read More…
Author: Lori Shogren, Community Program and Services Director An IAAD Like No Other September 25th is International Ataxia awareness Day (IAAD). Over the last 20 years IAAD has grown from Read More…
The Ataxia field desperately needs an Ataxia-specific PROM (Patient Reported Outcome Measure) to monitor issues that are meaningful to patients. Dr. Jeremy Schmahmann’s Lab at Massachusetts General Hospital has developed a PROM-Ataxia and now needs to determine if it is reliable when completed a few times over a month. They are seeking patients with Cerebellar Ataxia who can complete this scale at home, on 3 separate occasions, over a period of 1 month. This will allow them to assess the test-retest reliability of the PROM-Ataxia. For this project, Dr. Schmahmann’s lab needs access to 140 people with Cerebellar Ataxia. If you are interested in participating, please email Mary Ann Peterson, NAF’s Research Assistant at mary_peterson@ataxia.org so that she can mail you the PROM-Ataxia questionnaire to fill out and mail back to Dr. Schmahmann’s Lab. You will need to provide your postal address in your email to Mary Ann. Thank you for your willingness to participate in this study.
The Annual Ataxia Research Drive plays a crucial role in grants that we award to researchers. Donate today right here on Facebook or online at bit.ly/2pOGSeW. Your gift will be matched.
We're happy to welcome Dr. Jeremy Schmahmann as the keynote speaker for 2020 Annual Ataxia Conference. Join us in Denver to hear his keynote address, "Your Voice in Drug and Therapy Development."
Register now: bit.ly/2MT3eUt
Check out this free course to learn about the drug development process for rare diseases.
Understanding Drug Development
rareuniversity.com
Welcome to Understanding Drug Development, a 12-lesson course designed specifically for rare disease patients and advocates.For more information contact Susan Masse: Phone #: 860-528-1875 or E-mail: Smasse1875@gmail.com Read More…
Join us to socialize and share ideas! We will also discuss future meeting topics and dates. This location allows us to bring in food, snacks and beverages feel free. For more information contact Karen Russell at: 804-543-8707 or klruss@comcast.net Join our Facebook Group! Read More…
We hope to see you there! For more information contact: Lenore Healey Schultz at 612-724-3784 or schultz.lenore@yahoo.com Maryann Sweeney at 612-924-4947 or maryann.sween@gmail.com Read More…
Check back for more information regarding our November 2019 Social Outing location! Hope you can join us! Nebraska Support Group Leader Linda Snider Omaha, NE Phone #: 402-212-3060 Email: lindasnider@cox.net Read More…
Community support is vital to the work that NAF does. Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest Ataxia news with our e-newsletter and Generations publication.
