Speakers  Cynthia Roemer, MSA Coalition Board ChairCyndi Roemer has served as the MSA Coalition Board Chair since 2017. She was her mother’s primary caregiver, and has been an advocate for the multiple system atrophy community since her mother lost her battle to MSA in 2009. Recalling her own family’s experience navigating life with MSA, she has a strong interest in expanding support and educational services and in bringing the global advocacy community together to fight for this cause. Cyndi is a mathematics professor with a doctorate from Columbia University.Kymberli Roemer, MSA NJ Board ChairKym Roemer is the Board Chair and Co-Founder of MSA NJ. She has been involved in Multiple System Atrophy advocacy since losing her mother to MSA over a decade ago. She is...

CLICK HERE FOR SESSION HANDOUT  Complete Session Survey Presentation of results from MSA Needs Survey undertaken by the MSA Trust Speakers    Andy Barrick, Deputy CEO, MSA Trust UK and Ireland Andy Barrick, Deputy CEO, MSA Trust UK and Ireland Emma Saunders, MSA Nurse Specialist MSA Trust Emma Saunders MSA Nurse Specialist Moderators   Cyndi Roemer, MSA Coalition Board Chair Cyndi Roemer has served as the MSA Coalition Board Chair since 2017. She was her mother’s primary caregiver, and has been an advocate for the multiple system atrophy community since her mother lost her battle to...

CLICK HERE FOR SESSION HANDOUT  This lecture will provide information regarding the evolution of the role of Physical Therapy in a time of telehealth. Barriers and benefits of telehealth services will be discussed as well as application via a case study . This case study involves a woman living with MSA with therapy goals related to her functional mobility, falls prevention and ability to safely continue her favorite hobbies of cooking and gardening.Complete Session SurveySpeakers  Joellyn Fox, Dan Aaron Parkinson’s Rehab Center Penn Therapy & Fitness, PhD, DPT Lead TherapistA Lehigh University graduate with dual degree in biology and psychology and a graduate of Temple University’s DPT program who now resides in Philadelphia,...

Participants will learn: 1- What is mindfulness? 2 - What is stress? 3- Stress reaction 4-  Relaxation response 5 - CBT skills 6 - Suggestions for mindfully coping with chronic illness 7 - Meditation and benefits of meditation 8 - Engage in a mindfulness meditation exercise.Speaker  Victoria Pena-Cardinali, Capital HealthLicensed Clinical Social Worker, Clinical Coordinator for Capital Health Behavioral Health Specialists in Mercer County NJ and MSA NJ board member. Experience working with individuals living with chronic health conditions, families and caregivers at the Institute for Neurosciences at Capital Health. Support group facilitator and psychotherapist in practice with individuals and groups.Moderator  Lisa Hale, LMSWLisa Hale/HD...

CLICK HERE FOR SESSION HANDOUT   Changes in speech and swallowing function are common in people with MSA. The Speech-Language Pathologist (SLP) is the primary professional focused on the evaluation and management of these disorders. In this presentation we will discuss the tools in the SLP toolbox for the care of speech and swallowing disorders in MSA.Complete Session SurveySpeakers  Michelle Troche, PhD, CCC-SLP Director, Program in Communications Sciences & Disorders, Teachers College, Columbia UniversityDr. Michelle S. Troche is currently an Associate Professor and Program Director in the Communication Sciences and Disorders Program, Department of Biobehavioral Sciences at Teachers College, Columbia University. She holds adjunct...

CLICK HERE FOR SESSION HANDOUT  A description of my personal journey through multiple system atrophy with my husband, and how we built our care team. Guidance on interaction with friends, family and professionals , and links to to many different helpful resources.Complete Session SurveySpeakers  Carol Langer, Board Treasurer, MSA CoalitionCarol Langer trained as a CPA, and after working in public accounting was a senior financial executive for technology companies in the telecommunications, semiconductor test equipment, software and other technology areas until she retired in 2000 to care for her husband Rob, who was diagnosed with multiple system atrophy in 1998. She joined the Board of Directors and became Treasurer of the Multiple System Atrophy...

CLICK HERE FOR HANDOUT  Complete Session SurveyThis session will go over basic aspects of neurogenic orthostatic hypotension and measures you can take to prevent it's symptoms, both pharmacological and non-pharmacological.Speakers  Patricio Millar Vernetti, MD, NYU Langone Medical CenterDr. Millar is a neurologist who originally specialized in movement disorders. As many patients with these conditions present with or develop autonomic dysfunction, he has naturally transitioned to this field with a main focus on blood pressure changes in this population.Moderator  James (Jim) DuffySurviving spouse of an MSA Warrior. Retired from a career in pharmaceutical operations, blood banking and process improvement. Resides in Maple Valley, WA close to two...

CLICK HERE FOR HANDOUT  Complete Session SurveyHospice and palliative care are related, but not identical, approaches to dealing with the quality of life of seriously ill people. This presentation explains their similarities and differences.Speakers  Donald Pendley M.A., CAE, CFRE, APR, Director Hospice & Palliative Care, Home Care & Hospice Association of NJDon Pendley is Director of Hospice and Palliative Care for the Home Care and Hospice Association of New Jersey. For over two decades, he was President of the New Jersey Hospice and Palliative Care Organization. In those roles, he has advised hospices, healthcare professionals, government officials and the public on many aspects of hospice and palliative care. He has personally counseled over 30,000...

CLICK HERE FOR HANDOUT  Complete Session Survey Keara and Rachel are both occupational therapists and assistive technology professionals who will discuss various options for assistive technology (both high and low tech) to support independence. The instructors will review options and built-in accessibility features for improved access to your home, cell phone, tablet, and computer. Speakers    Keara McNair, OTR/L, BCPR, ATP, Kessler Institute Keara McNair is an advanced clinical specialist occupational therapist at Kessler Institute for Rehabilitation in West Orange, NJ with over nine years of experience working in inpatient rehabilitation with individuals with spinal cord injury/disease and other neurological conditions. Keara is co-lead of...

CLICK HERE FOR PARKINSON'S HANDOUT  CLICK HERE FOR UROLOGICAL HANDOUT  CLICK HERE FOR MENDLIKMSA HANDOUT  Complete Session Survey 9:00AM - 10:30AM EST Medical Panel: Overview, Systems & Trends     Parkinsonism, Parkinson's and MSA: Concepts and Distinctions     Speaker Andres Deik, MD MSEd, Pennsylvania Hospital Dr. Andres Deik, MD, MSEd is a graduate of the Universidad del Norte in his native Barranquilla, Colombia. He completed his residency in Neurology and fellowship in Movement Disorders at Mount Sinai Beth Israel, in New York City. He was also awarded a scholarship from the Dystonia Medical Research Foundation...

CLICK HERE FOR EXERCISE YOUR SPEECH AND VOICE HANDOUTCLICK HERE FOR SWALLOWING STRATEGIES HANDOUTCLICK HERE FOR TAKE CARE OF VOICE HANDOUTCLICK HERE FOR THERAPEUTIC EXERCISE HANDOUTComplete Session SurveySpeech and Swallowing Management in MSA  This presentation will briefly discuss possible changes in speech and swallow function in Multiple System Atrophy and several treatment/management approaches.SpeakerCatie Kane, M.ED, CCC-SLP, Corporal Michael J. Crescenz VA Medical CenterCatie Kane is a speech-language pathologist at the Corporal Michael J. Crescenz VA Medical Center and at the Hospital at the University of Pennsylvania. She works with many patients referred from the VA's PADRECC (Parkinson's Disease Research, Education, and Clinical Center) who...

CLICK HERE FOR NATURAL HISTORY STUDY UPDATE HANDOUTCLICK HERE FOR CLINICAL TRIALS FOR MSA HANDOUTComplete Session SurveyNovel Diagnostic Markers & Status Update on Stem Cells as Treatment Approach to MSA  I will be discussing the need for better diagnostic markers in MSA, and share information about already established as well as recently developed biomarkers. I will also discuss the current status of stem cell research in MSA, recent additional findings, and future plans. The session will wrap up with a word of caution about unapproved stem cell therapy.SpeakerWolfgang Singer, MD, Mayo ClinicI am a neurologist at Mayo Clinic Rochester with a clinical and research interest in disorders affecting the autonomic nervous system in general, and MSA in...

Click here for Session Handouts   Living with MSA Speakers    Emma Saunders Emma Saunders MSA Nurse Specialist Samantha Pavey and Emma Saunders are MSA Nurse Specialists, working for the MSA Trust in the UK. Their role is to provide information and support to people affected by MSA Samantha Pavey Samantha Pavey and Emma Saunders are MSA Nurse Specialists, working for the MSA Trust in the UK. Their role is to provide information and support to people affected by MSA. Moderators  Diane AdkinsCyndi RoemerCyndi Roemer has...

This session aims to define the etiology and clinical presentation of Neurogenic Orthostatic Hypotension. Furthermore it will explore conservative measures as well as available pharmacological interventions to treat the symptoms of Neurogenic Orthostatic Hypotension. Speakers   Katie Kompoliti, MDAikaterini Kompoliti, MD, was born in Greece and completed her early education there, including medical school. After graduating from the University of Patras Medical School, Greece, she pursued her interest in neuroscience by completing a residency in neurology at Northwestern University, Chicago, followed by a fellowship in movement disorders at Rush University Medical Center, Chicago. After the completion of her fellowship, she became a faculty member in movement disorders in...

Click Here for Session Handout  Session Transcript  Music can be a powerful tool in supporting individuals with MSA and their families. In this session, Dr. Wellman will describe music therapy, explain how music therapy may impact those with MSA, give examples of ways to use music today, and share resources to find music therapists in your area.Speakers  Becky Wellman, Ph.D, LPMT, MT-BCDr. Becky Wellman is a board certified and licensed music therapist, and neurologic music therapy fellow at Cleveland Clinic Lou Ruvo Center for Brain Health where she works with individuals with neurodegenerative disorders and their caregivers. She is an adjunct instructor of human services/elder studies at Ivy Tech Community College of...

A description of my personal journey through multiple system atrophy with my husband, and how we built our care team. Guidance on interaction with friends, family and professionals , and links to to many different helpful resources.Speakers  Carol Langer, Board Treasurer, MSA CoalitionCarol Langer trained as a CPA, and after working in public accounting was a senior financial executive for technology companies in the telecommunications, semiconductor test equipment, software and other technology areas until she retired in 2000 to care for her husband Rob, who was diagnosed with multiple system atrophy in 1998. She joined the Board of Directors and became Treasurer of the Multiple System Atrophy Coalition in 2013, and also serves as a member of the Leadership Board and...

Click here for Session Handout  Session Handout  Session Handout  Session Handout  MSA Brain Donation: The value to you, your family, researchers, and the futureSpeakers  Robin RiddleRobin learned about neurodegenerative decline when her late father, Larry, was diagnosed with progressive supranuclear palsy (PSP) in 2004. The donation of Larry’s brain in 2007 to Mayo Clinic in Jacksonville, Florida, was Robin’s first organization of a brain donation. Her efforts to help MSA, PSP, Parkinson's, and Lewy body dementia families nationally became the nonprofit organization, Brain Support Network, in 2012. Robin and BSN have arranged over 800 brain donations.Moderators  Jim Duffy

Explanation of the importance of spiritual health, as part of a trio with physical and emotional health, when facing difficult illnesses.Speakers  Allyson MayeuxI am a member of the MSA Coalition Board of Directors and practice general internal medicine in Marshfield, WI, where I completed my residency in that specialty.  I am a native of Louisiana and a graduate of LSU Medical School New Orleans.  My family and I walked with my brother Hal on his journey with MSA.Moderators  Erin Williams

A discussion of the gut-brain axis and how it relates to MSA, current research related to the gut microbiome, and nutrition considerations and recommendations for people with MSASpeakers  Matt BekeMatthew Beke is a Clinical Dietitian working at the Normal Fixel Institute for Neurological Diseases. He is also a doctoral student researching the effect of dietary fibers on GI symptoms in people with Parkinson's Disease. As a dietitian, he cares for patients with a variety of neurological conditions, including MSA. He hopes that by increasing the visibility of MSA to the public that this will generate interest in research and creating impactful nutrition therapies for this disease.Matthew Beke is a Clinical Dietitian working at the Normal Fixel Institute for Neurological...

Click here for Session Handouts  The session will describe the clinical trial process, clinical trials for medications in trial for MSA, and how an individual with MSA can prepare to participate in a clinical trial. Speakers  Susan Perlman, MD, University of California LASusan Perlman, MD, University of California LADr Perlman completed her MD degree at the medical school of the State University of New York Stony Brook. She completed her Neurology residency and fellowship in Neurogenetics at UCLA Medical Center, where she has been on the clinical faculty since 1981. She is director of the Ataxia Center, the Huntington’s Disease Center of Excellence, and the Neurogenetics Clinical Trials Unit.Moderators  Patricia Libby

9:30AM  - 12:00PM EST  Medical Panel  Chelimsky Handout 1  Chelimsky Handout 2  Guralnick Handout  Massey Handout  The Movement Disorder(s) of MSA  SpeakerDaniel Classsen, MD, MS, Vanderbilt University Medical CenterDr. Daniel Claassen is a Neurologist who specializes in the treatment of neurodegenerative disorders characterized by disruptions to cognition, behavior, and movement. He is the Chief of the Behavioral and Cognitive Neurology division at Vanderbilt University Medical center. His research efforts focus on the neurobiology of behavior, where he employs multimodal imaging and cognitive neuroscience methods to understand and develop novel treatments. He leads early and...

12:15PM - 1:45PM Allied Health & Support Services with Q & A  Pre-Read: https://chicago.suntimes.com/platform/amp/2020/10/9/21505037/stacy-oliver-obituaryHalbur Handout  Reinhard Handout  Thiel Handout  Physical Therapy Management for Patients with MSA  This session will focus on what physical therapy can offer the patient with MSA throughout each stage of the disease. We will explore the role of exercise, focus on reducing falls risk, and caregiver training.SpeakerCodi Halbur, DPT, Froedtert HospitalI received my bachelor’s degree from the University of Wisconsin-Madison in Rehabilitation Psychology in 2012 and then received my Doctorate of Physical Therapy from the University of...

Khurana Handout  2:30 pm - 3:30 pm Research Panel  Research Horizons  SpeakerDaniel Claassen, MD, MS, Vanderbilt University Medical CenterDr. Daniel Claassen is a Neurologist who specializes in the treatment of neurodegenerative disorders characterized by disruptions to cognition, behavior, and movement. He is the Chief of the Behavioral and Cognitive Neurology division at Vanderbilt University Medical center. His research efforts focus on the neurobiology of behavior, where he employs multimodal imaging and cognitive neuroscience methods to understand and develop novel treatments. He leads early and late phase clinical trials that assess symptomatic and disease modifying therapies in MSA, and has successfully lead...