NAF announces selections for first round of Ataxia Centers of Excellence. LEARN MORE!
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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.
Register for these upcoming webinars, then browse by topic to view recordings for past webinars. We add new sessions every month. Check back often!
June 6, 2023 | 1 PM CDT
Natalie Witek, MD
Rush University Medical Center
Do you or a loved one have Immune-Mediated Ataxia? Join our webinar to learn about the mechanisms of the disease, the diagnostic journey, and what to expect for clinical care with this diagnosis.
June 14, 2023 | 12 PM CDT
Jennifer Keller, PT, MS
Johns Hopkins University
This will be a seated exercise webinar for all ages and abilities. Jennifer Keller, PT, MS will introduce Tai Chi Basic Moves and the Tai Chi Fundamentals Adapted Form. Learn more about Tai Chi at www.taichihealth.com.
June 20, 2023 | 1 PM CDT
Lydia E. Chévere
Social Security Administration
Learn the differences between the SSI and SSDI programs and how you can help others apply for these important benefits.
This will be a live audience only webinar. It will NOT be recorded or distributed after the webinar.
June 21, 2023 | 10 AM CDT
Monica Banez-Coronel, PhD
University of Florida
and
Mary Ann Peterson
National Ataxia Foundation
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. We will then hear from an ataxia researcher about how postmortem brain tissue makes a difference in ataxia research. If you have ever wondered about brain donation, come to this webinar to get your questions answered.
June 26, 2023 | 10 AM CDT
Jérôme Honnorat, MD, PhD
Lyons Hospital
Do you or a loved one have Immune-Mediated Ataxia? Our expert will teach us how it is studied and give an overview of the current state of research and drug development for the disease.
July 11, 2023 | 10 AM CDT
Giulia Coarelli, MD, PhD
Pitié-Salpêtrière University Hospital
Dr. Coarelli will teach us how SCA2 is studied and give an overview of the current state of research and drug development for the disease.
July 28, 2023 | 10 AM CDT
Speakers: Gulin Oz, PhD; Sophie Tezenas Du Montcel, MD, PhD; Tetsuo Ashizawa, MD
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. If you have ever had questions about natural history studies or observational studies, then this webinar is for you.
3 de agosto | 11:30 AM CDT
Paulina Gonzalez-Latapi MD, MsC
Hispanic Movement Disorders Clinic at Northwestern
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 will be presented in Spanish. It will provide an overview of the different Ataxias and available treatment options. You will also learn about resources from the National Ataxia Foundation.
Adapted Tai Chi for Ataxia
Research and Treatment Development for SCA1
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
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SPEAKER NAME
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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.
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
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SPEAKER NAME
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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.
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
Adaptive Recreation
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SPEAKER NAME
WEBINAR DESCRIPTION
Day Undefined – Liam Dougherty and Kate Leader
Join Day Undefined’s product reviewers to learn about products under $20 and hacks to make your home more accessible.
Day Undefined – Liam Dougherty and Kate Leader
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.
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
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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.
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
Adapted Tai Chi for Ataxia
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SPEAKER NAME
WEBINAR DESCRIPTION
Jennifer Keller, PT, MS
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.
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.
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
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SPEAKER NAME
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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.
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 SCA6
All About SCA3/MJD
All About Friedreich’s Ataxia
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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.
Jennifer Faber, MD
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.
Hayley McLoughlin, MD, PhD
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.
David Lynch, MD, PhD
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.
Marek Napierala, PhD
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.
Anoopum Gupta, MD, PhD
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.
Alanna Watt, PhD
This webinar taught us how SCA6 is studied and gave an overview of the current state of research and drug development for the disease.
Sharan Srinivasan, MD, PhD
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.
James Orengo, MD, PhD
This webinar taught us how SCA1 is studied and gave an overview of the current state of research and drug development for the disease.
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
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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.
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.
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