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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. 

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!

April 24 @ 12:00 pm - 1:00 pm
April 30 @ 11:30 am - 12:30 pm
May 1 @ 12:00 pm - 1:00 pm
May 2 @ 10:00 am - 11:00 am
June 6 @ 12:00 pm - 1:00 pm
June 25 @ 1:00 pm - 2:00 pm
July 10 @ 1:00 pm - 2:00 pm
August 14 @ 12:00 pm - 1:00 pm
September 19 @ 12:00 pm - 1:00 pm
October 10 @ 1:00 pm - 2:00 pm
November 6 @ 12:00 pm - 1:00 pm

Please note: Times listed are Central Time. When you register for a session, Zoom will send you an email with a link to add the event to your calendar. The session will convert to your local time zone.

Recently Featured

CRC-SCA Natural History Study Information Panel

Safety in Clinical Trials

Drug Development from a Biotech Perspective

Ask the Ataxia Expert Recordings

NAF 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.

NAF Science Showcase Recordings

The NAF Science Showcase series features a new NAF-funded researcher each month. View recordings of those sessions and find information for upcoming sessions at www.ataxia.org/showcase

Care for Care Partners Recordings

NAF’s Care for Care Partners series focuses on topics relevant to those who care for people with Ataxia. View recordings of those sessions and find information for upcoming sessions at www.ataxia.org/carepartners

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!

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SPEAKER NAME

WEBINAR DESCRIPTION

Ali Hamedani, MD

This session discusses visual symptoms associated with Ataxia. This includes double vision and other symptoms associated with eye movement abnormalities, which occur in Cerebellar Ataxia of any cause, as well as some discussion of retinal and optic nerve disease, which may occur in some specific genetic causes of Ataxia.

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.

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SPEAKER NAME

WEBINAR DESCRIPTION

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. 

Mary Ann Peterson

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

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. 

Dr. Ian Harding

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. 

Dr. Celeste Suart

The amount of information on the internet can be overwhelming. It’s hard to know where to start. In this session, we will be going over tips and tricks for finding reliable information about Ataxia online. Attendees will learn about key features of reliable healthcare information websites and strategies for protecting your privacy online. We will conclude by going through examples of reputable online sources of Ataxia information.

David Spotts

The work of biotechnology and pharmaceutical companies is one of the many driving forces behind Ataxia drug development. In this session, we give you a behind-the-scenes view into the drug development process from the perspective of a biotech employee. We touch on the different stages and milestones in drug development from preclinical research to FDA approval and beyond. We discuss how long each stage can take, (and why), the different kinds of teams involved, and key acronyms used. We hope this is a fun and informative session if you’re completely new to hearing about drug development or even if you’ve heard some of this before!

Serena Hung, MD

Participating in clinical research has potential benefits, as well as risks. There are layers of rules in place to keep clinical trial participants safe. But just how exactly are participants protected? In this session, we will go through the safeguards in place to protect participants at all stages of clinical research. This includes how studies are designed, informed consent, and safety monitoring in trials. Watch this PrepRARE webinar to learn more about what goes on behind the scenes to protect you and your loved ones.

Laura Crespo, Chelsea Chen, Tyler Maxwell, Cyndie Ritz

Have you ever wondered what it is like to participate in an Ataxia natural history study? This type of research study collects data about how specific types of Ataxia progress over time. Learn about the CRC-SCA Natural History Study in this PrepRARE webinar. This panel will feature current study participants and clinical research coordinators. They will talk about what it is like to be part of this study, explain how to get involved, and answer your questions about the CRC-SCA Natural History Study.

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.

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SPEAKER NAME

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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

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.

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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.

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 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.

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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 

Life management strategies, including physical activity, play an integral role in effective management of Ataxia. Indications for intensive physical therapy are individually determined and considers a wide range of factors. Current updates in rehabilitation as well as the benefits of physical activity will be discussed. Additionally, this session will cover safe functional strategies as well as effective motor learning strategies in people living with Ataxia.

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.

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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.

WEBINAR TITLE

SPEAKER NAME

WEBINAR DESCRIPTION

Unknown Ataxia

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.

SCA3

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.

Friedreich's Ataxia

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.

SCA6

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.

SCA1

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.

Immune-Mediated Ataxia

Natalie Witek, MD

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.

Jérôme Honnorat, PhD

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.

SCA2

Giulia Coarelli, MD, PhD

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.

Sokol Todi, PhD

This webinar taught us how SCA2 is studied and gave an overview of the current state of research and drug development for the disease.

About Ataxia - In Spanish

Paulina Gonzalez-Latapi MD, MsC

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.

SCA8

Odinachi Oguh, MD

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.

Hannah Shorrock, PhD

This webinar taught us how SCA8 is studied and gave an overview of the current state of research and drug development for the disease.

SCA7

Ali Hamedani, MD

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.

Colleen Stoyas, PhD

This webinar taught us how SCA7 is studied and gave an overview of the current state of research and drug development for the disease.

MSA-C

Elizabeth Coon, MD

This webinar gave an overview of the causes and symptoms of the MSA-C, the typical diagnostic journey for those affected, and what to expect for clinical care.

Shoji Tsuji, PhD

This webinar taught us how MSA-C is studied and gave an overview of the current state of research and drug development for the disease.

SCA27B

Bernard Brais, MDCM, MPhil, PhD, FRCPC and David Pellerin, MD, MSc, FRCPC

This webinar gave an overview of the causes and symptoms of the SCA27B, the typical diagnostic journey for those affected, and what to expect for clinical care.

Bernard Brais, MDCM, MPhil, PhD, FRCPC and David Pellerin, MD, MSc, FRCPC

This webinar taught us how SCA27B is studied and gave an overview of the current state of research and drug development for the disease.

Episodic Ataxia

Anhar Hassan, MBBCh, BAO, FRACP, FRCPI, FAAN

This webinar gave an overview of the causes and symptoms of the Episodic Ataxia, the typical diagnostic journey for those affected, and what to expect for clinical care.

Lorenzo Cingolani, PhD

This webinar taught us how Episodic Ataxia is studied and gave an overview of the current state of research and drug development for the disease.

CANVAS (Cerebellar Ataxia with Neuropathy and Vestibular Areflexia Syndrome)

David Szmulewicz, PhD

This webinar gave an overview of the causes and symptoms of Cerebellar Ataxia, Neuropathy and Vestibular
Areflexia Syndrome (CANVAS), the typical diagnostic journey for those affected, and what to expect for clinical care.

Andrea Cortese, MD, PhD

This webinar taught us how CANVAS is studied and gave an overview of the current state of research and drug development for the disease.

SCA5

Theresa Zesiewicz, MD

This webinar gave an overview of the causes and symptoms of Spinocerebellar Ataxia type 5 (SCA5), the typical diagnostic journey for those affected, and what to expect for clinical care.

Adam Avery, PhD

This webinar taught us how SCA5 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.

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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