Join the Summer Match Challenge! All donations during the month of June will be matched by the Clementz-Peterson Family Fund and an anonymous donor, up to $100K. DONATE
Join the Summer Match Challenge! All donations during the month of June will be matched by the Clementz-Peterson Family Fund and an anonymous donor, up to $100K. DONATE
April 9 – 11, 2026
The Annual Ataxia Conference (AAC) is where our community comes together—people living with Ataxia, their loved ones, and the experts working toward treatments and a cure. It’s a time to learn, share, and connect with others who understand the journey.
📍 Rosen Centre Hotel – Orlando, FL
Speakers: Andrew Rosen, Joel Sutherland, and Dana Mauro
Kick off the 2026 Annual Ataxia Conference with an inspiring welcome from NAF CEO Andrew Rosen, VP of Development Joel Sutherland, and advocate Dana Mauro. Join us as they set the stage for an incredible event filled with learning, connection, and community. Let’s make this an unforgettable conference together!
Speaker: Liana Rosenthal, MD Receiving an Ataxia diagnosis can feel overwhelming, and preparing for your first specialist appointment often brings many questions. This session will walk you through what to expect at a neurologist visit, including key topics to discuss and how to advocate for your needs. You’ll leave with practical tips and resources to help you feel confident and prepared for the next steps in your care.
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Speaker: George “Chip” Wilmot, MD, PhD
Managing Ataxia often involves both medical treatment for symptoms and lifestyle choices. In this session, you’ll learn how medications and diet can work together to support your health. You’ll come away with practical guidance to discuss with your care team and apply in daily life.
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Hear from Jack with the non-profit, Moving Forward 4 Ataxia. Along with special guest, Bill Nye the Ataxia Advocate!
Speakers: Joel Sutherland and Dana Mauro
Joel and Dana are back to kick off the final day of the 2026 AAC. Get ready for ful day of celebrating the strength our our community as we look ahead to the future of Ataxia research and making a difference.
Speaker: Elizabeth Foss, OTR/L
Combining 16 years of experience along with a love for the ataxia community, Occupational Therapist, Elizabeth Foss, wil review a variety of adapted equipment and home modifications for ADL independence. She wil then discuss the prevalence and causes of fatigue specific to ataxia and highlight various techniques and interventions to reduce fatigue levels and risk for falls.
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Speaker: Jeremy Schmahmann, MD, FAAN, FANA, FANPA
In this presentation Dr. Schmahmann wil discuss the cerebelar cognitive affective syndrome, what it is, why it happens, and how it can affect daily life and interactions for ataxia patients and families. Recognizing that chalenges to intelectual function and to emotion modulation is not “in your head but in your brain”, a result at least in part of the ataxia disease itself, presents opportunities to understand and address the chalenges, and seek ways to minimize distress and enhance function and quality of life.
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Moderator: Celeste Suart, PhD Panelists: Amy DeLeon, Matthew Lafleur, and Troy Stewart
Hear directly from individuals and families living with Ataxia as they share personal stories, chalenges, and strategies for navigating daily life. This panel wil offer a range of perspectives to highlight the realities of the condition and the resilience of the community. Attendees wil gain valuable insights, encouragement, and practical ideas for their own journeys.
Speaker: Jin Yun Helen Chen, CGC
Genetic testing can provide important answers about the type of Ataxia a person has and what it means for their family. In this session, experts wil explain the testing process, what results may reveal, and how to approach next steps. Attendees wil gain a clearer understanding of the benefits, limitations, and considerations involved in genetic testing.
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Moderator: Ali G Hamedani, MD, MHS
This panel wil bring together representatives from leading pharmaceutical companies advancing drug development programs across the ataxias, including the spinocerebelar ataxias (SCAs), Friedreich’s ataxia (FA), and other related disorders. Spanning preclinical discovery through active clinical-stage trials, the discussion wil highlight diverse therapeutic strategies, key chalenges, and emerging opportunities shaping the ataxia treatment landscape. The session wil be moderated by Ali Hamedani, Director of the Ataxia Center of Excelence at University of Pennsylvania, who wil guide conversation around innovation, colaboration, and the path toward meaningful therapies for patients.
Join us as we close the conference by celebrating outstanding contributions from researchers and community members through our annual awards. This session will highlight the achievements that move us closer to treatments and honor the dedication of those making a difference in the Ataxia community. We’ll also share final reflections and gratitude as we conclude this year’s event.
Speakers: Fiona Cauley and Bill Nye
We’re thriled to welcome comedian Fiona Cauley as our Saturday night guest at the 2026 Annual Ataxia Conference. Fresh off national TV appearances, Fiona brings sharp wit and fearless storyteling inspired by her lived experience with Friedreich Ataxia. Introduced by Bil Nye, the Science Guy, this special evening wil bring the community together for laughter, connection, and celebration.
We’re looking for partners to support 2026 AAC and help us bring this impactful program to the Ataxia community! Thank you to our sponsors who have already committed to supporting this event!
Contact Rich McCutchen at rich@ataxia.org for more information.
If you have other questions about AAC, please contact NAF at naf@ataxia.org for more information or call us at 763-553-0020.
