Skip to content

Walk N’ Roll season is upon us! Find an event near you.  LEARN MORE!

2023 Annual Ataxia Conference

March 30 - April 1, 2023


First Hybrid AAC Was a Huge Success

As interest continues to grow from the pharmaceutical industry in developing drugs to treat Ataxia, we believe that collaboration among researchers, clinicians, pharmaceutical companies, and Ataxia patients is at a critical moment. Each of these groups must work together, as partners, to advance progress toward better patient care and more effective treatments for Ataxia. The 2023 AAC gave use the opportunity to connect, learn, and take action toward accelerating treatment development!  


Day One - Thursday, March 30, 2023

Newly Diagnosed

Receiving a diagnosis of Ataxia can be overwhelming. There is a lot to learn, but you are not alone. This session helps you learn how to take charge of your care plan and hear about the personal journey of someone who has been where you are.

First Timers

There is a lot to do and learn at AAC. This session was held for those who are attending for their first time. There were some helpful tips for those who are newly diagnosed as well.

Mindful Meditation

Meditation is an atmosphere of gentleness and growth-at-your-own-pace. This session was led by an experienced teacher. Learn about the interactive dynamic process of guided meditation and how it can help improve your relationship with yourself and people around you.

Day Two - Friday, March 31, 2023

Late Breaking News

Reata Pharmaceuticals discussed SKYCLARYS (omaveloxolone), now approved for the treatment of Friedreich’s Ataxia. The session also explored an overview of the drug development process which brought this treatment option from the research bench to FDA approval.

Breakthroughs in Ataxia Research

It has been an exciting few years for Ataxia discovery and treatment development, including the identification of a genetic mutation for one type of Ataxia. Speakers reviewed some of the biggest recent breakthroughs. This session also included a special appearance from Bill Nye (yes, the Science Guy!). He shared his family’s personal experience searching for an Ataxia diagnosis.

Please note: In this session, Bill Nye encourages everyone to fill out their consent forms. He is referring generally to a form that you are asked to complete when you are volunteering to participate in a research study. The forms are different for each study. He is encouraging everyone to participate in research whenever they can. Sign up for the CoRDS Patient Registry to be notified when a study is available for your type of Ataxia.

Medications and Diet for Ataxia

There are a number of medications and dietary changes that can be used to address symptoms caused by Ataxia. Dr. Perlman will review things that her patients have found helpful. Use these ideas to discuss options with your physician.

Inclusive & Accessible Social Media: Tools and Technology to Empower You

Social media has the power for us to build community and empower others to bring about positive change. Jourdan discussed practical tools and strategies to ensure that social media is more inclusive and accessible. Learn ways to connect, build community, and access valuable resources through social media.

Maharishi AyurVeda and Integrative Medicine (MAVIM) for Ataxia

Maharishi Integrative AyurVeda is a holistic system of health care that utilizes Maharishi AyurVeda and modern medicine, and includes mental, physical, behavioral, and environmental approaches. The goal of these approaches is to enliven the body’s inner intelligence, which is understood to be unified organizing principle at the basis of all physiological self-repair and balancing mechanisms. Learn how this system may be beneficial to a person affected by Ataxia.

Chair Yoga & Mobility

Sacred Mountain’s philosophy is simple, if you can breath, you can do yoga. They teach a non-dogmatic, no-fluff approach to yoga. It’s accessible for people in chairs and wheelchairs, and no previous experience is neccesary. 

Music Therapy

Music therapy is the use of music delivered by a board-certified music therapist to improve and support an individual’s health. Amanda Rosado introduces the basic concepts of music therapy to help you learn if it might be a good treatment option for you.

Day Three - Saturday, April 1, 2023

Keynote: Progress Toward Treatment for Ataxia

Advancements in technology have improved our understanding of disease and led to new, innovative approaches to tackling Ataxias. As interest continues to grow from the pharmaceutical industry in developing drugs to treat Ataxia, we know that collaboration among researchers, clinicians, pharmaceutical companies, and Ataxia patients is at a critical moment. Learn why it is important for each of these groups to work together, as partners, to advance progress toward better patient care and more effective treatments for Ataxia.

Mobility Devices

There are many things that you can do to make your everyday life more accessible. Physical Therapists Jennifer Millar and Jennifer Keller discuss safe mobility strategies and present a variety of devices and strategies that can improve mobility.

Rehabilitation Strategies

This session reviewed suggested exercises to promote optimal function and current evidence in the Ataxia rehabilitation literature

Neuropsychology of Ataxia

Neurological diseases can have an impact on cognition and behavior. Dr. Ritter will tell us about the psychological changes that might occur in those affected by Ataxia. He will also dive deeper into the role of the cerebellum in behavior and thinking.

Living with Ataxia

This panel discussion included people affected by Ataxia. They talked about strategies for living better with Ataxia. 

Care for the Care Partners

Often a parent or spouse takes on the role of the care partner. When giving hands-on care, a care partner may be under constant physical stress. In both cases, the emotional stress can be overwhelming. This session explores the challenges there are in meeting the 24/7 needs of the patient and self-care, and how those challenges can be overcome. 

Strategies to Mitigate Speech and Swallowing Impairments in Ataxia

Speaking and swallowing can become more difficult as Ataxia progresses. Dr. Hilger shared strategies and exercises to help improve your speech and swallowing.

Take Action

After hearing about all the great progress going on with treatment development, you might be wondering what you can do to get involved. Dana and Joel walk you through ways to take action and get involved in the fight for a cure. 

2023 Awards Ceremony

There are many people in the Ataxia community that volunteer their time and talents to improve the lives of people affected by this disease. We honor a few community members for their exceptional accomplishments in 2023.


NAF invites world-leading Ataxia researchers and physicians to present at AAC. 

Beth Ann Bitner

Community Member

Liora Brunn, MA CM

Zoetic Workshops

Jonas Cepkauskas

Community Member

Beverly Davidson, PhD

Children’s Hospital of Philadelphia

Kathleen Gingerelli

Community Member

Allison Hilger, PhD CCC-SLP

University of Colorado Boulder

Derrian Hollingsworth

Community Member

Jennifer Keller, PT MS

Johns Hopkins University

Natalie Marnica, CYT

Sacred Mountain Yoga

Dana Mauro

Community Member

Hayley McLoughlin, PhD

University of Michigan

Jennifer Millar, MSPT

Johns Hopkins University

Mark and Leah Minkin

Community Members

Lauren Moore, PhD

National Ataxia Foundation

Sue Moore

Community Member

Bill Nye

Community Member

Odinachi Oguh, MD

Cleveland Clinic – Lou Ruvo Center of Brain Health

Susan Perlman, MD

UCLA Neurological Services

Aaron Ritter, MD

Hoag | Pickup Family Neurosciences Institute

Amanda Rosado, MMT, LPMT, MT-BC

Anchored Hope Therapy

Andrew Rosen

National Ataxia Foundation

Jourdan Saunders, MS, CCC-SLP

The Resource Key

Lori Shogren

National Ataxia Foundation

Joel Sutherland

National Ataxia Foundation

Celeste Suart, MS

McMaster University

Lenore Healey Schultz

Community Member

Shirley Swier Jones

Community Member

Kristy Taylor

Community Member

Tanoa Thome

National Ataxia Foundation

Sarah Ying, MD

Massachusetts Eye and Ear Infirmary

2023 AAC Sponsors



General Questions

If you have other questions about AAC, please contact Sarah Pilato at for more information or call us at 763-553-0020. 

Print Friendly, PDF & Email
Translate »

Join the Ataxia community today!

Become a free member for exclusive content from NAF.