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
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!
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.
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.
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.
Community Member
Zoetic Workshops
Community Member
Children’s Hospital of Philadelphia
Community Member
University of Colorado Boulder
Community Member
Johns Hopkins University
Sacred Mountain Yoga
Community Member
University of Michigan
Johns Hopkins University
Community Members
National Ataxia Foundation
Community Member
Community Member
Cleveland Clinic – Lou Ruvo Center of Brain Health
UCLA Neurological Services
Hoag | Pickup Family Neurosciences Institute
Anchored Hope Therapy
National Ataxia Foundation
The Resource Key
National Ataxia Foundation
National Ataxia Foundation
McMaster University
Community Member
Community Member
Community Member
National Ataxia Foundation
Massachusetts Eye and Ear Infirmary
If you have other questions about AAC, please contact Sarah Pilato at sarah@ataxia.org for more information or call us at 763-553-0020.
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.
