NAF hosts educational webinars about Ataxia presented by industry experts. Learn about important topics related to living with Ataxia. Webinars are complimentary for NAF members, with new sessions offered each month. Join NAF to receive invitations to upcoming Ataxia webinars.
NAF also hosts an Ask the Ataxia Expert session every other month. These sessions are unscripted and allow you to submit questions, live, to an Ataxia clinician. View recordings of those sessions and find information for upcoming sessions at www.ataxia.org/asktheexpert.
Upcoming Webinars
Register for these upcoming webinars, then browse by topic to view recordings for past webinars. We add new sessions every month. Check back often!
Clinical Care, Physical Therapy, and Occupational Therapy
You are not alone on your journey with Ataxia. We invite leading Ataxia care specialists to teach you the latest best-practices for clinical care, physical therapy, occupational therapy, and more!
Clinical Care for Ataxia
Occupational Therapy Strategies for Improving Daily Living
Living Well with Ataxia: A Palliative Care Approach
Information about treatment for Ataxia has been constantly changing, especially in the last few years. So, what are your options? Learn about current medical treatments available for Ataxia, including medication therapy. Considering cannabis as an option? Find out how it affects Ataxia patients.
Jessica Wilchinski, OTR/L and Marlena Barbera, OTR/L, CLT
Learn occupational strategies to increase access to and independence with performing activities of daily living within the home and community. The session will highlight universal design/home modifications, adaptive tools, and lifestyle modifications which can be used to increase participation in meaningful activities, overall safety, and reduce excessive fatigue within tasks.
Palliative care is a medical specialty that focuses on matching the values and goals of the patient to the treatment plan. It seeks to address all forms of suffering (physical, psychological, spiritual, practical) with the use of an interdisciplinary team and tries to facilitate having more good days than bad. This approach can be especially helpful for patients and families living with Ataxia.
This webinar introduces ways to identify swallowing, speech and cognitive challenges and implement exercises and resources to address them during this pandemic and beyond.
Receiving a diagnosis of Ataxia can be overwhelming. This session helps those who were recently diagnosed learn about things they can do to manage their care.
Experts from Johns Hopkins and Kennedy Krieger join NAF to explain how to recognize Ataxia in children. They discuss the importance of achieving a diagnosis, review available treatments, and discuss guidelines for disease management, with a focus on navigating school accommodations and services.
Pravin Khemani, MD, FAAN; Jeremy D. Schmahmann, MD, FAAN, FANA, FANPA
Pravin Khemani, MD, FAAN and Jeremy D. Schmahmann, MD, FAAN, FANA, FANPA discuss the novel COVID-19 virus and the challenges the pandemic poses to patients with Ataxia.
Research and Drug Development
NAF is committed to accelerating developments of treatment and a cure for Ataxia. That also means keeping you informed about research and drug development as it happens.
What are Natural History Studies?
Brain Donation in Ataxia: Your Questions Answered
An Intro to Drug Development for the Ataxias
Full List of Webinars on Research or Drug Development
Drs. Gülin Öz, Sophie Tezenas Du Montcel, Tetsuo Ashizawa
In this session, we will learn what natural history studies are, what participants are asked to do in natural history studies, and why natural history studies are so important for ataxia research. We will then conclude with how people can get involved in natural history studies.
In this session, we will learn all about the NAF Brain Donation Program. This program allows Ataxia patients to donate brain tissue for scientific research after their passing. The coordinator of the Brain Donation Program will discuss the logistics of brain donation, how to enroll, and frequently asked questions about the program. For more information on Ataxia, please visit our website: https://www.ataxia.org/braindonation
The process for developing new treatments for any disease is long and complicated. This webinar will break down the process that every potential new therapy must go through from early lab testing through clinical trials and finally FDA approval before it is available to all affected individuals. Updates on progress towards effective therapies for multiple forms of genetic and sporadic ataxia will also be presented, along with information on how patients and their families can become partners in this process.
STRIDES Study for SCA3 – A Clinical Research Study of an Investigational New Drug to Treat Spinocerebellar Ataxia Seelos Therapeutics physicians provided an overview of the STRIDES study, which is currently open to patient recruitment in the United States. The overview will include background information on the Investigational drug, SLS-005, patient eligibility criteria, study center locations, and other important study design elements.
Dr. Chuang, a a Medical Director in Early Clinical Development in the PD/Movement Disorders Neurodegeneration Unit at Biogen, discussed the SCA3 ASO (anti-sense oligonucleotide) study that is currently recruiting, reviewed important aspects of Biogen’s clinical trial, and discussed how the drug will be studied for Ataxia.
In this webinar Dr. Moore discusses her background as an Ataxia researcher and family member and provides useful tips for how to find and prepare for participation in clinical trials.
Biomarkers are increasingly important in drug development and obtaining approval from the FDA to bring a new treatment to the market. Learn about biomarkers for Ataxia and their importance to clinical trial readiness.
As pharmaceutical companies move forward with developing therapies for Ataxia, it is important for the community to be “clinical trial ready.” What does that mean? And what can you do to get ready? Learn all about it in this webinar.
George (Chip) Wilmot, MD, PhD, Melissa Beiner, MD, and Michael Curtis, PhD
A discussion on the stages of development for Ataxia treatments, challenges, and how the Ataxia community will play a key role as research collaborators.
Dr. Pravin Khemani, David Brunnert, Sandy Read, and Julie Geye
Participants in research studies and clinical trials are no longer being referred to as “guinea pigs”. They are true “research collaborators,” working together with researchers, clinicians and industry partners. This moderated panel includes research collaborators who will share their experiences about participating in a clinical trial.
This webinar explains the purpose of an Externally-Led Patient Focused Drug Development meeting, discusses background information about the FDA and their role in drug development.
Pharmaceutical companies describe the drug development process as a “pipeline.” Now that we have emerging Ataxia medications “in the pipeline” – we need to know that that means. Dr. Perlman and Dr. Shakkottai will take us through the process and help us understand how a rare disease fits into the model systems that pharmaceutical companies use to get a medication to the market.
The needs in Ataxia research are always changing. As we move into an era of clinical trials for potential treatments, Dr. Orr will discuss how NAF is adapting its research funding strategy to meet the needs of Ataxia Investigators and continue to accelerate the development of Ataxia treatments.
In modern medical research and treatment discovery, patients are research collaborators. Scientists and industry cannot make their discoveries without the collaboration of individuals affected by the disease. They are the true experts. Learn why people with Ataxia are the key to finding treatments and what you can do to become a research collaborator.
Dr. Vikram Shakkottai, Laura Ruggiero, and Ken Jones
As Ataxia research moves forward, there will be more opportunities to participate in clinical trials. What does this mean for you, the Ataxia patient? Watch this webinar to learn about the different phases and definitions of clinical trials, what you should think about before joining one, and what you can expect when you participate.
Learn about different imaging techniques used in Ataxia research and clinical care. Dr. Ian Harding from Monash University discusses three different kinds of imaging methods: MRI, CT, and PET. Learn about how each technique works and what information can be learned from these techniques.
Accessible Living
Adaptive devices and technology can help improve independence and quality of life for a person with a disability. These webinars explore topics to help you live better with Ataxia.
Everyday Items for Accessible Living
Low-Cost to No-Cost: Everyday Items for Accessible Living
Day Undefined is an online marketplace that takes a fresh approach to adaptive products. They assess everyday household products and home technologies that might be helpful for individuals with physical disabilities based on real insights and experiences from the disability community. Join co-founders Liam Dougherty and Kate Leader to learn about some products that might be helpful to those affected by Ataxia.
Linda Snider, Chelsea Elder, Michael Cammer, and David Thomson
The “need to do something for recreation” is an essential element of human biology and psychology. Recreational activities are often done for enjoyment, amusement, or pleasure and are considered to be “fun.” This session discusses adaptive recreation opportunities to improve quality of life for persons with Ataxia of all ages and stages of progression.
Technology can help make things possible for people with a disability. Learn about products and techniques that help with speech, swallowing, and other activities of daily living.
Occupational therapist, Elizabeth Foss, speaks with Charlotte Depew, an Ataxia Support Group Leader, on ways to make everyday living with Ataxia easier.
Genetics & Testing
Genetic testing can play an important role in determining options that are available to those with hereditary forms of Ataxia. Some research opportunities might require a confirmed diagnosis of Ataxia to participate. Genetic testing for the Ataxias is complicated, has different methodologies and needs to be carefully chosen in order to provide accurate information. These webinars offer a deeper dive into genetics of Ataxia and your options for genetic testing.
All About Genetic Testing
Genetic Testing
About Whole Genome Sequencing
Full List of Webinars on Genetics or Genetic Testing
Genetic testing to confirm a diagnosis of Ataxia can be an incredibly useful tool. Genetic testing can help inform decisions around family planning, healthcare/lifestyle choices, and professional/financial planning. A confirmed genetic diagnosis is also often a requirement for participation in clinical trials.
Accurately diagnosing patients with Ataxia through genetic testing is vital to move treatment development forward. Genetic testing is rapidly evolving for Ataxia, making testing more accessible and affordable. We’ll discuss the changing landscape of genetic testing and the many considerations that go into pursuing a diagnosis.
Variantyx reviews several cases in which Whole Genome Sequencing helped determine the cause of Ataxia.
Diet and Exercise
Take matters into your own hands with tips for diet and exercise for Ataxia to improve your health. These various webinars will get you started! Plus, check out our full series of Chair Yoga & Mobility videos that are perfect for any abilities.
Chair Yoga & Mobility for People Affected by Ataxia
Tai Chi is a slow, graceful ancient exercise that promotes calm mental focus and alignment while building leg strength, endurance, and balance. Jennifer Keller introduced Tai Chi Basic Moves and the Tai Chi Fundamentals Adapted Form.
Learn helpful tips for healthy food choices and info about specific types of Ataxia that can be improved through diet. Modified diet and rehabilitation options for those with swallowing concerns were also explored.
Learn helpful tips for healthy food choices and info about specific types of Ataxia that can be improved through diet. Modified diet and rehabilitation options for those with swallowing concerns were also explored.
Do you or someone you care about struggle to find ways to stay active and mobile? For people affected by Ataxia it can be hard to stay mobile when challenged with balance and other neurological issues. That’s why we’re offering this special Chair Yoga and Mobility online series for the global Ataxia community.
Mental Health
For families affected by Ataxia, addressing mental health can be just as important as clinical care for physical health. Damage to the cerebellum may cause difficulty expressing thoughts logically and coherently, memory problems, and/or mood changes which might include depression, apathy, irritability and limited frustration tolerance. These webinars address topics related to mental health.
Living and Coping with Ataxia
A Wholehearted Life: One Step at a Time
Psychological Aspects of Ataxia
Full List of Webinars on Mental Health and Cognition
Theresa Chase, ND, MA, RN, Charlotte DePew, Destinee Juarez, and Deserae Anderson
This panel discussion, facilitated by Theresa Chase, ND, MA, RN, includes people affected by Ataxia who discuss strategies to live better with Ataxia. Charlotte DePew, Destinee Juarez, and Deserae Anderson cover topics that include themes and questions that were submitted by members of the Ataxia community.
Sometimes, one step at a time is the best way to move forward. This session will help you formulate one action step for a personal transformation as we discuss challenges of life with a disability and identify the capacity for resilience in our own lives.
Learn directly from a Licensed Mental Health Therapist about the ways that Ataxia might impact your mental health. Learn how to understand the grief associated with receiving a diagnosis, how to be emotionally self-aware, and how resiliency can improve your outlook on life.
Caring for someone with a chronic disease can be difficult for the “healthy” partner. This session, presented by physicians and care partners, talks about strategies for self-care while you support your loved one.
Ataxia Type-Specific Webinars
NAF is producing a series of monthly educational webinars that focus on one type of Ataxia at a time. We will feature a different type each month. Clinical experts will join us to take a look at the causes and symptoms of the disease, the typical diagnostic journey for those affected, and what to expect for clinical care. Research experts will teach us how the disease is studied and give an overview of the current state of research and drug development.
Full List of Webinars on Specific Types of Ataxias
Many people with Ataxia do not yet have a diagnosis for their disease. Our clinical expert joined us to take a look at the causes and symptoms of unknown Ataxia without a family history, the typical diagnostic journey for those affected, and what to expect for clinical care.
Ataxia is a rare neurological disease that can have a wide array of genetic origins. While some forms of the disease have been identified, many people with Ataxia do not yet have a diagnosis for their disease. This webinar explores how the unknown Ataxias are studied and an overview of the current state of research and drug development.
SCA3 (also known as Machado-Joseph Disease) is one of the most common type of Spinocerebellar Ataxias. This webinar covers the causes and symptoms of SCA3/MJD, the typical diagnostic journey for those affected, and what to expect for clinical care.
SCA3 (also known as Machado-Joseph Disease) is one of the most common type of Spinocerebellar Ataxias. This webinar taught us how SCA3 is studied and gave an overview of the current state of research and drug development for the disease.
Friedreich’s Ataxia is one of the most common recessive Ataxias. This webinar covers the causes and symptoms of FA, the typical diagnostic journey for those affected, and what to expect for clinical care.
Friedreich’s Ataxia is one of the most common recessive Ataxias. This webinar taught us how FA is studied and gave an overview of the current state of research and drug development for the disease.
SCA6 or Spinocerebellar Ataxia 6 is a rare neuromuscular disease. This webinar gave an overview of the causes and symptoms of the disease, the typical diagnostic journey for those affected, and what to expect for clinical care.
This webinar gave an overview of the causes and symptoms of the SCA1, the typical diagnostic journey for those affected, and what to expect for clinical care.
This webinar gave an overview of the causes and symptoms of the Immune-Mediate Ataxia, the typical diagnostic journey for those affected, and what to expect for clinical care.
This webinar taught us how Immune-Mediated Ataxia is studied and gave an overview of the current state of research and drug development for the disease.
This webinar gave an overview of the causes and symptoms of the SCA2, the typical diagnostic journey for those affected, and what to expect for clinical care.
En este seminario hablaremos sobre los distinto tipos de Ataxia. Asimismo, aprendera sobre los tratamientos disponibles y recursos que puede acceder por medio de la National Ataxia Foundation.
This webinar gave an overview of the causes and symptoms of the SCA8, the typical diagnostic journey for those affected, and what to expect for clinical care.
This webinar gave an overview of the causes and symptoms of the SCA7, the typical diagnostic journey for those affected, and what to expect for clinical care.
This webinar taught us how SCA7 is studied and gave an overview of the current state of research and drug development for the disease.
Financial Planning
Managing finances can present unique challenges for a person who is affected by a rare disease. These webinars cover special topics that can be helpful to people with Ataxia.
ABLE Act
10 Basic Financial Steps for Special Needs Caregivers
Kelly Piacenti and Jerry Hulick, CLU, ChFC, ChSNC, CLTC
This workshop provides an overview of the ABLE Act, as well as special needs trusts, and how they may help to ensure quality of life for dependents with special needs. This law will allow qualified individuals with disabilities to have tax-free savings accounts. This webinar will be most useful to those who had disease onset before the age of 26 or who have dependents or loved ones who are or were under that age when they became disabled.
Kelly Piacenti and Jerry Hulick, CLU, ChFC, ChSNC, CLTC
This workshop addresses issues such as applying for government benefits for Social Security and Medicaid, creating a Special Needs Trust, the importance of a Will, and considering a Letter of Intent. Taking 10 basic steps now can help ensure the type of care and quality of life for a loved-one’s well-being today and tomorrow.
Learn from a clinical social worker about things that you can do to advocate for your needs in terms of clinical care, medical equipment, home modifications, disability insurance through your employer, government benefits, and more.
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