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National Ataxia Foundation

Accelerate!

Ataxia Webinars

On-demand recordings to learn more about managing your health.

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!

All About SCA3/MJD

February 13, 2023 | 11 AM CST

Jennifer Faber, MD
DZNE

Do you or a loved one have SCA3 (also known as Machado-Joseph Disease). Join our webinar to learn about the causes and symptoms of SCA3, the typical diagnostic journey for those affected, and what to expect for clinical care.

Low-cost to No-cost: Everyday Products and Hacks Ranging from $20 to Free

February 16, 2023 | 12 PM CST

Liam Dougherty and Kate Leader
Day Undefined

Day Undefined is an online marketplace that reviews everyday products for accessible living. Join co-founders Liam Dougherty and Kate Leader to learn about low-cost to no-cost products that might be helpful to those affected by Ataxia.

Research and Treatment Development for SCA3/MJD

February 16, 2023 | 3 PM CST

Dr. Hayley McLoughlin
University of Michigan

Our expert will teach us how SCA3/MJD is studied and give an overview of the current state of research and drug development for the disease.

Recently Featured

Research into the Genetics of Unknown Ataxia without Family History

PrepRARE: All About Genetic Testing

All About Unknown Ataxia without a Family History

Living with Ataxia

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

Full List of Webinars on Living with Ataxia

WEBINAR TITLE

SPEAKER NAME

WEBINAR DESCRIPTION

Abigail Collins, MD; Trevor Hawkins, MD; Lauren Seeberger, MD

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.

Christina Vaughan, MD, MHS

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.

Amanda Gallagher, MA, CCC-SLP

This webinar introduces ways to identify swallowing, speech and cognitive challenges and implement exercises and resources to address them during this pandemic and beyond.

Elizabeth Foss, OTR/L

Ataxia affects balance and coordination. Learn about things that you can do to improve your balance and prevent falls.

Jennifer Millar and Jennifer Keller

Learn about physical therapy strategies designed specifically for people affected by Ataxia.

George “Chip” Wilmot, MD, PhD

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. 

Dr. Kristin Barañano; Dr. Eric Chin

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.

An Intro to Drug Development for the Ataxias

STRIDES Study for SCA3 – A Clinical Research Study

MERA Study for BIIB134 – A First in Human Clinical Trial for SCA3

Full List of Webinars on Research or Drug Development

WEBINAR TITLE

SPEAKER NAME

WEBINAR DESCRIPTION

Lauren Moore, PhD

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.

Seelos Therapeutics

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. Rosalind Chuang

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.

Lauren Moore, PhD

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.

Puneet Opal, MD, PhD; Hayley McLoughlin, PhD

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.

Melissa Beiner, MD; Liana Rosenthall, MD, PhD; Kristy Taylor, Beth Bowerman

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.

Tetsuo Ashizawa, MD, FAAN, Gülin Öz, PhD, and Henry Paulson, MD, PhD 

Ever wondered how Ataxia research works? Learn how patients are selected to participate and what happens once you’re involved in a research study.

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.

James E. Valentine, J.D., M.H.S., and Larry Bauer

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.

Dr. Susan Perlman and Dr. Vikram Shakkottai

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.

Dr. Harry Orr

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.

Dr. Jeremy Schmahmann

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. 

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

Adaptive Recreation

Ataxia, Assistive Technology, and Swallowing

Full List of Webinars on Accessible Living

WEBINAR TITLE

SPEAKER NAME

WEBINAR DESCRIPTION

Day Undefined – Liam Dougherty and Kate Leader

View PowerPoint

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.

Carolyn Buchanan, MA, CCC-SLP, ATB, CBIS; Todd Fix, MA, CCC-SLP, CBIS

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.

Elizabeth Foss, OTR/L and Charlotte Depew

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

WEBINAR TITLE

SPEAKER NAME

WEBINAR DESCRIPTION

Tara Newcomb, MS CGC

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.

Emily Todd, MS CGC

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

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

Dietary Considerations in Ataxia

Mobility & Exercise: Strategies to Keep Moving

Full List of Webinars on Diet or Exercise

WEBINAR TITLE

SPEAKER NAME

WEBINAR DESCRIPTION

Dr. Susan Perlman

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.

Jennifer Millar, MSPT and Jennifer Keller, PT, MS 

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.

CHAIR YOGA SESSIONS

SPEAKER NAME

WEBINAR DESCRIPTION

Natalie Marnica
Sacred Mountain Yoga

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

WEBINAR TITLE

SPEAKER NAME

WEBINAR DESCRIPTION

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.

Theresa Chase, ND, MA, RN

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.

Jeremy Schmahmann, MD, FAAN, FANA, FANPA

Dr. Jeremy Schmahmann reviews how cognition and emotion are impacted by Ataxia.

Tamara McCord, LMHC

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.

Liana Rosenthal, MD, PhD; Frank Tinari, PhD; Stephanie Leonard, Sherri Hubbard

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.

All About Unknown Ataxia without a Family History

Research into the Genetics of Unknown Ataxia without a Family History

Full List of Webinars on Specific Types of Ataxias

WEBINAR TITLE

SPEAKER NAME

WEBINAR DESCRIPTION

George “Chip” Wilmot, MD, PhD

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. 

Brent Fogel, MD, PhD

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.

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

Insights from a Social Worker

Full List of Webinars on Financial Planning

WEBINAR TITLE

SPEAKER NAME

WEBINAR DESCRIPTION

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.

Erin Cecchi, MSW

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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2023 Annual Ataxia Conference: Partnering for Progress

Join us to connect, learn, and take action toward accelerating treatment development!