NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
SIGN THE PETITION
March 27-29, 2025
We invite you to be part of the largest Ataxia gathering in the world to learn, share, network, and have fun at this year’s Annual Ataxia Conference: Partnering for Progress!
Daily Welcome
Kick off the 2025 Annual Ataxia Conference with an inspiring welcome from NAF CEO Andrew Rosen, VP of Development Joel Sutherland, and advocate Dana Mauro.
Newly Diagnosed/Prepping for a Neurologist Visit
Receiving a diagnosis of Ataxia can be overwhelming. There is a lot to learn, but you are not alone. This session will help you learn how to take charge of your care plan.
Adaptive Tai Chi
Tai Chi is a slow, graceful ancient exercise that promotes calm mental focus and alignment while building leg strength, endurance and balance. The session will introduce the Tai Chi Basic Moves and the Tai Chi Fundamentals Adapted Form (Tai Chi Health, Inc). The exercise session can be done sitting or standing.
Rhythmic Rehabilitation
Have you noticed how your body naturally moves to a beat? It’s due to how we process rhythm. Music helps organize movement in our brains, telling the body when and how to move. In this class taught by a music therapist, we will use music, rhythm and instruments as part of a functional exercise routine. Together, we’ll get our bodies moving and have fun along the way.
Medications & Diet
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 so you can use these ideas to discuss options with your physician.
Assistive Technology & Strategies to Mitigate Speech & Swallowing Impairments in Ataxia
Speech and swallowing impairments commonly arise in individuals affected by Ataxia. In this session, we will explore two major questions: 1) Why are these changes happening? and
2) What strategies and resources are available to improve, optimize, and maintain the ability to communicate and swallow effectively?
Adaptive Tai Chi – Session 2
Tai Chi is a slow, graceful ancient exercise that promotes calm mental focus and alignment while building leg strength, endurance and balance. The session will introduce the Tai Chi Basic Moves and the Tai Chi Fundamentals Adapted Form (Tai Chi Health, Inc). The exercise session can be done sitting or standing.
Rhythmic Rehabilitation – Session 2
Have you noticed how your body naturally moves to a beat? It’s due to how we process rhythm. Music helps organize movement in our brains, telling the body when and how to move. In this class taught by a music therapist, we will use music, rhythm and instruments as part of a functional exercise routine. Together, we’ll get our bodies moving and have fun along the way.
Daily Welcome
Joel and Dana are back to kick off the final day of the 2025 AAC. Get ready for full day of celebrating the strength our our community as we look ahead to the future of Ataxia research and making a difference.
Accessing Local Resources
Accessing daily living resources can significantly improve quality of life for people living with Ataxia. This session will discuss some useful resources for daily living that might be helpful, including support organizations at the national, state and local level for issues concerning assistive devices, transportation, financial, educational and family/caregiver needs.
Cognition & Mood in Ataxia
In this session we explore the common mood and cognitive symptoms in Ataxia and management strategy.
Occupational Therapy & the Treatment of Ataxia: The Road to Independence
This session will explore strategies to increase AOL independence through various home modifications and use of adapted equipment.
Rehabilitation Strategies & Mobility Devices
This session offers a practical, evidence-based approach to managing mobility challenges associated with Ataxia. Explore rehabilitation strategies designed to improve balance and strength while gaining insights into selecting and utilizing mobility devices to enhance safety and independence. Perfect for patients, caregivers, and professionals looking to optimize mobility and quality of life.
Panel Discussion: Living with Ataxia
A dynamic panel of individuals living with Ataxia share real-life strategies, personal experiences, and expert tips for navigating daily challenges and improving quality of life. This engaging discussion offers inspiration, practical advice, and a sense of community for anyone affected by Ataxia.
Genetic Testing: Arriving at the End of the Diagnostic Odyssey
Join us for a conversation between genetic counselor Meron Azage and Mary Hogan, Director of the SCA27B Foundation, as they discuss the importance of genetic testing for hereditary ataxias and the challenges of navigating life after a genetic diagnosis. In this session, the benefits of advocacy, support group involvement and research will be covered.
Research Update
Exciting advancements in Ataxia research are happening every year, bringing us closer to new treatments and, ultimately, a cure. In this session, NAF s Chief Scientific Officer, Dr. Lauren Moore, will share the latest scientific discoveries, updates on clinical trials, and progress in drug development. Learn what these breakthroughs mean for the Ataxia community and how they are shaping the future of care and treatment.
How We Win This Battle & Defeat Ataxia
NAF LIVE from Planet Hollywood! Presented by the Development Team of Joel Sutherland, Jon Wegman, Meg Hanna, and Rich McCutchen along with special guest NAF CEO Andrew Rosen.
Closing Remarks/Awards Ceremony
Celebrate outstanding contributions to the Ataxia community, research, and advocacy with our annual awards presentation. This special event recognizes individuals whose dedication is making a lasting impact. Plus, hear from Bill Nye, one of this year’s honorees, as he shares his thoughts on the power of science, awareness, and community in the fight against Ataxia.
Keynote Speaker: Jacob Thompson
Tai Chi is a slow, graceful ancient exercise that promotes calm mental focus and alignment while building leg strength, endurance and balance. The session will introduce the Tai Chi Basic Moves and the Tai Chi Fundamentals Adapted Form (Tai Chi Health, Inc). The exercise session can be done sitting or standing.
NAF invites world-leading Ataxia researchers and physicians to present at AAC. Check out our lineup of industry experts!
NAF Chief Scientific Officer
NAF Patient Engagement Manager
NAF Chief Executive Officer
NAF VP of Development
NAF Development Manager
NAF Development Coordinator
NAF Development Manager
We’re looking for partners to support 2025 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.
