Speaker Directory

Speaker Profile
Abraham Labrada-Santiago, MDiv, BCC
Originally from Mexico City, Abraham is a Palliative Care Chaplain at Mayo Clinic in Rochester, MN, at the in-patient and outpatient setting. His interest is to provide spiritual and emotional support for patients and their families during the journey of serious illness with the goal of maintain ...
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Originally from Mexico City, Abraham is a Palliative Care Chaplain at Mayo Clinic in Rochester, MN, at the in-patient and outpatient setting. His interest is to provide spiritual and emotional support for patients and their families during the journey of serious illness with the goal of maintain dignity and meaning in their life as well as to reduce suffering in order to improve quality of life.
Speaker Profile
Adele Pattinson, RDN, LD, CNSC
Adele Pattinson is a registered dietitian who is also a certified nutrition support clinician at Mayo Clinic in Rochester, Minnesota. She received a Bachelor of Science degree from Iowa State University in Clinical Nutrition and completed her internship at the Medical College of Virginia, in ...
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Adele Pattinson is a registered dietitian who is also a certified nutrition support clinician at Mayo Clinic in Rochester, Minnesota. She received a Bachelor of Science degree from Iowa State University in Clinical Nutrition and completed her internship at the Medical College of Virginia, in Richmond, Virginia. She has been working in the field of for over 30 years presenting at many state and national conferences and contributing to research in the field of nutrition support. She works with a team of nurses, dietitians, nurse practitioners, and physicians that share the passion to decrease malnutrition. She is a self-proclaimed “high calorie, high protein dietitian” working with patients with a variety of medical conditions. It is a pleasure to participate in the conference today.
Speaker Profile
Adrienne Glusman
Adrienne Glusman is professional speaker, ambassador and advocate on the topic of Millennial Caregiving, sharing her story and journey as an only-child caregiver to her mom, Hetty, who passed away in 2020 after living with Multiple System Atrophy since 2010. Adrienne's story as Hetty's caregiver ...
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Adrienne Glusman is professional speaker, ambassador and advocate on the topic of Millennial Caregiving, sharing her story and journey as an only-child caregiver to her mom, Hetty, who passed away in 2020 after living with Multiple System Atrophy since 2010. Adrienne's story as Hetty's caregiver was featured in a Wall Street Journal article, 'The Call To Care for Aging Parents Comes Sooner Now'. Her story has also been featured in Health magazine, Toronto Sun and Vox.com to name a few. In addition to keynoting national conferences for Leading Age, National Church Residences and the Multiple System Atrophy Coalition, Adrienne has also been involved with various caregiving campaigns including serving as a caregiver ambassador for EMD Serono's Embracing Carers, Leading Age's 'Carry the Convo' and The Scan Foundation's 'Do You Give a Care'.   You can follow her on Instagram and Facebook @younglifeinterrupted, or subscribe to her podcast, Young Life Interrupted where she is lending a voice to her journey so other young caregivers can feel seen, heard and supported.
Speaker Profile
Alain Ndayisaba
Alain Ndayisaba conducted his medical training at the Medical University Innsbruck, Austria with a scientific focus on MSA under the mentorship of Prof. Gregor K. Wenning and Prof. Nadia Stefanova, leaders in the MSA field. In addition, Dr. Ndayisaba has been actively engaged in fostering public ...
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Alain Ndayisaba conducted his medical training at the Medical University Innsbruck, Austria with a scientific focus on MSA under the mentorship of Prof. Gregor K. Wenning and Prof. Nadia Stefanova, leaders in the MSA field. In addition, Dr. Ndayisaba has been actively engaged in fostering public awareness for MSA as member of the Bishop Dr. Karl Golser Foundation, an international partner of the MSA Coalition. Since 2019, he has been conducting his research in the lab of MSA Coalition Board Member Prof. Vikram Khurana at Brigham and Women’s Hospital, Harvard Medical School, co-mentored by Prof. Wenning and Prof. Stefanova, where his goal is to create a human disease model for MSA in the dish allowing us to understand key pathological events in MSA.
Speaker Profile
Becky Wellman, PhD, LPMT, MT-BC
Becky Wellman, PhD, LPMT, MT-BC is a board certified, licensed music therapist. Dr. Wellman is a Neurologic Music Therapy-Fellow and has additional trainings in grief, therapeutic drumming, guided imagery, dementia approaches, and psychological first aid. She is adjuct instructor of Human Services ...
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Becky Wellman, PhD, LPMT, MT-BC is a board certified, licensed music therapist. Dr. Wellman is a Neurologic Music Therapy-Fellow and has additional trainings in grief, therapeutic drumming, guided imagery, dementia approaches, and psychological first aid. She is adjuct instructor of Human Services specializing in elder studies at Ivy Tech Community College of Indiana.
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Bill Underwood
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Carina Peritore
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Carol Langer
Carol 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 ...
Carol Langer, Speaker
Carol 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 Chair of the Neuroscience Advisory Committee for Beth Israel Deaconess Medical Center, as well as a Trustee and Treasurer of the Huntington Theatre Company. Carol has an A.B. from Boston University in English Language and Literature and an M.S. from Northeastern University in Accounting. 
Speaker Profile
Cathy Chapman
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Cathy Shonley, CCC-SLP
Catherine A. Shonley, MA, CCC-SLP, is an Allied Health Speech-Language Pathologist at Mayo Clinic in Rochester, Minnesota. She earned her BA in communication sciences and disorders from Northwestern University in 2008, followed by her MA in speech-language-hearing sciences from The University of ...
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Catherine A. Shonley, MA, CCC-SLP, is an Allied Health Speech-Language Pathologist at Mayo Clinic in Rochester, Minnesota. She earned her BA in communication sciences and disorders from Northwestern University in 2008, followed by her MA in speech-language-hearing sciences from The University of Minnesota in 2010. She was then fortunate enough to return to her hometown to complete her clinical fellowship at Mayo Clinic and has enjoyed the varied patient population and invaluable mentorship of her colleagues there ever since. She works primarily with adults in the inpatient and outpatient settings with a focus on assessing and treating dysphagia arising from neurologic injury and illness, head and neck cancer, and other etiologies.
Speaker Profile
Chidimma Nguma, MSN, GNP, ANP-BC, ACHPN
Chidimma is a board-certified adult nurse practitioner working in UT Southwestern Medical Center's Department of Neurology, working with Dr. Steven Vernino. Sections include MSA, Autonomic Disorders and the Stroke clinic. Prior to joining the neurology department, she worked at the Harold C. ...
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Chidimma is a board-certified adult nurse practitioner working in UT Southwestern Medical Center's Department of Neurology, working with Dr. Steven Vernino. Sections include MSA, Autonomic Disorders and the Stroke clinic. Prior to joining the neurology department, she worked at the Harold C. Simmons Comprehensive Cancer Center where she assisted with building a new Palliative Care clinic as well as a Survivorship Program. She is board certified as a Hospice and Palliative Care Nurse Practitioner.
Speaker Profile
Christy Ross, PT, DPT, GCS, CDP, MSCS
Christy Ross, PT, DPT, CDP, MSCS, and Board-Certified Geriatric Clinical Specialist, completed a geriatric residency program at University of Delaware following completion of her DPT at Creighton University. Dr. Ross continued her studies at the University of Michigan in Advanced Clinical Dementia ...
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Christy Ross, PT, DPT, CDP, MSCS, and Board-Certified Geriatric Clinical Specialist, completed a geriatric residency program at University of Delaware following completion of her DPT at Creighton University. Dr. Ross continued her studies at the University of Michigan in Advanced Clinical Dementia Practice. For the past 10 years, she has practiced in the outpatient neurodegenerative setting at the Cleveland Clinic Lou Ruvo Center for Brain Health, Las Vegas, NV. She has shared her passion through publications, lectures, mentorship, and community programs that serve the aging neurodegenerative population.
Speaker Profile
Claudia Chou, MD
Dr. Claudia Chou is a hospice and palliative care physician at Mayo Clinic in Rochester, Minnesota. Her background is in both neurology (specifically movement disorders) and hospice and palliative care. She is particularly interested in developing models of integrating palliative care into ...
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Dr. Claudia Chou is a hospice and palliative care physician at Mayo Clinic in Rochester, Minnesota. Her background is in both neurology (specifically movement disorders) and hospice and palliative care. She is particularly interested in developing models of integrating palliative care into neurology and teaching trainees and providers in neurology and palliative care about neuropalliative care. Her current favorite hobby is chasing after a very active toddler.
Speaker Profile
Cyndi Roemer
Cyndi has served as the Chairperson of the MSA Coalition since 2017. A life-long New Jersey resident, Cyndi completed her doctoral work at Columbia University and is currently a full-time mathematics professor. Cyndi was a primary caregiver to her mother, Dolores, who lost her battle with MSA on ...
Cyndi Roemer, Speaker
Cyndi has served as the Chairperson of the MSA Coalition since 2017. A life-long New Jersey resident, Cyndi completed her doctoral work at Columbia University and is currently a full-time mathematics professor. Cyndi was a primary caregiver to her mother, Dolores, who lost her battle with MSA on Mother’s Day 2009, after which Cyndi became an outspoken advocate for support, education, and research. If those of us who have travelled this path do not help, then who will?” Cyndi’s areas of interests on the Board include education and conference planning, along with support services. She has been a driving force in the development of the MSA Global Advocacy Consortium, bringing together established charities to increase support and education worldwide and strengthen the voice of the MSA community.
Speaker Profile
Daniel Claassen, MD, MS
Dr. Daniel Claassen is an Associate Professor of Neurology at Vanderbilt University and a neurologist specializing in the care of patients with neurodegenerative disorders, with particular interest in patients with cognitive dysfunction and movement disorders. He earned his medical degree from the ...
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Dr. Daniel Claassen is an Associate Professor of Neurology at Vanderbilt University and a neurologist specializing in the care of patients with neurodegenerative disorders, with particular interest in patients with cognitive dysfunction and movement disorders. He earned his medical degree from the Medical College of Georgia and completed his Neurology residency training at the Mayo Clinic, in Rochester, MN and postdoctoral training at the University of Virginia, in Charlottesville, VA. He is a past recipient of the American Academy of Neurology clinical research training grant, and his work is currently funded by the National Institues of Health.
Speaker Profile
David Stamler, MD
David Stamler, M.D. has over 25 years of experience in the pharmaceutical industry and has led three drug approvals for treatment of neurological disorders. He was appointed Chief Executive Officer of Alterity Therapeutics in January 2021 after having served as the Chief Medical Officer and Senior ...
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David Stamler, M.D. has over 25 years of experience in the pharmaceutical industry and has led three drug approvals for treatment of neurological disorders. He was appointed Chief Executive Officer of Alterity Therapeutics in January 2021 after having served as the Chief Medical Officer and Senior Vice President, Clinical Development since 2017. Prior to joining Alterity, Dr. Stamler was Vice President and Therapeutic Head for Movement Disorders at Teva Pharmaceutical Industries from 2015 to 2017 after Teva acquired Auspex Pharmaceuticals, where he had served as the Chief Medical Officer since January 2011. While at Auspex/Teva, Dr. Stamler led the development and approval of deutetrabenazine for the treatment of Huntington’s disease, an Orphan disease, and tardive dyskinesia. Dr. Stamler received his M.D. and B.A. degrees from the University of Chicago.
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Diane Adkins
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Diane Graham
Diane leads a monthly support group in Des Moines, Iowa, for anyone who has been touched by multiple system atrophy. Diane’s husband Daniel Miller battled the disease from 2012 until he passed away in February 2018. Diane and her husband were both journalists for more than three decades, she with ...
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Diane leads a monthly support group in Des Moines, Iowa, for anyone who has been touched by multiple system atrophy. Diane’s husband Daniel Miller battled the disease from 2012 until he passed away in February 2018. Diane and her husband were both journalists for more than three decades, she with the Des Moines Register and he with Iowa Public Television. Using her journalism background, she assisted the grassroots MSA community with writing press releases to publicize MSA awareness month and the launch of the first medical textbook on MSA. Their daughter, adopted from China, is a senior at Duke University. . Diane is always eager to share her ideas and to support other MSA families.
Speaker Profile
Don Crouse
Don joined the MSA Coalition in 1998 and is one of the originating Board members. Don became connected to multiple system atrophy as a result of his marketing career in the pharmaceutical industry, where he worked on two products commonly prescribed to people with MSA. In his 23 years of volunteer ...
Don joined the MSA Coalition in 1998 and is one of the originating Board members. Don became connected to multiple system atrophy as a result of his marketing career in the pharmaceutical industry, where he worked on two products commonly prescribed to people with MSA. In his 23 years of volunteer service, Don has played an invaluable leadership role in building the MSA Coalition into a world-class charitable organization. In 2012, it was his vision to expand the organization from primarily being a support group into a nonprofit that also funded research and developed educational programming.
Speaker Profile
Dr. Gregor Wenning
Prof. Gregor Wenning leads a team of 30 research fellows exclusively dedicated to MSA at the division of clinical neurobiology, medical university Innsbruck, Austria. His preclinical and clinical research is reflected in over 600 publications including books and book chapters, 42159 citations, ...
Prof. Gregor Wenning leads a team of 30 research fellows exclusively dedicated to MSA at the division of clinical neurobiology, medical university Innsbruck, Austria. His preclinical and clinical research is reflected in over 600 publications including books and book chapters, 42159 citations, H-Index 104 and 6,8 Mill Euro competitive MSA research funds (https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(12)70052-2/fulltext). He is currently Chair of the MSA study group of the Movement Disorder Society (MoDiMSA-SG - www.movementdisorders.org/MDS/About/Committees--Other-Groups/Study-Groups/Multiple-System-Atrophy.htm) as well as the MDS MSA Diagnostic criteria revision taskforce. He also leads the European MSA (EMSA) study group (www.emsa-sg.org), the first European study group focusing on MSA, which he founded in 1999 with Prof. W. Poewe. He is also member of the Board of Directors of the MSA Coalition and president of its scientific advisory board.
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Dr. Guillaume Lamotte
I am a neurologist with subspecialty training in movement disorders and autonomic disorders. I completed my medical school, neurology residency and my movement disorders training in France. I also did a neurology residency in the United States between the National Institutes of Health and ...
I am a neurologist with subspecialty training in movement disorders and autonomic disorders. I completed my medical school, neurology residency and my movement disorders training in France. I also did a neurology residency in the United States between the National Institutes of Health and Georgetown University Hospital in Washington, DC, and a fellowship in autonomic disorders at the Mayo Clinic in Rochester, MN. I am an assistant professor of neurology in the movement disorders division at the University of Utah in Salt Lake city. I see patients in the clinic and I do research on autonomic dysfunction in patients with movement disorders such as multiple system atrophy or Parkinson's disease.
Speaker Profile
Dr. Patrick Cras
Patrick Cras, MD, PhD. was born on June 19 th , 1958 and graduated as an MD in 1983. His research mainly focuses on neurodegenerative disease such as Parkinson’s disease and dementia, with an emphasis on rapidly developing dementias such as prion disease and Creutzfeldt-Jakob disease. Presently ...
Patrick Cras, MD, PhD. was born on June 19th, 1958 and graduated as an MD in 1983. His research mainly focuses on neurodegenerative disease such as Parkinson’s disease and dementia, with an emphasis on rapidly developing dementias such as prion disease and Creutzfeldt-Jakob disease. Presently Chairman of the Department of Neurology of the Antwerp University Hospital and professor of neurology at the University of Antwerp, he trained as a research fellow in the Laboratory of Neuropathology at the Born Bunge Institute (IBB, 1983-1985) and in the pathology laboratory at the Antwerp University Hospital followed by a Fogarty Fellowship in neuropathology at Case Western Reserve University, Cleveland Ohio (1989-1991). Back at the University of Antwerp, he developed the biomarkers diagnosis of Alzheimer’s disease in cerebrospinal fluid (CSF). Biobanking of brains, DNA and CSF was started in collaboration with VIB (prof. C. Van Broeckhoven). In 1998 he initiated the surveillance center for human prion diseases in collaboration with Sciensano and the European Center for Disease Control. Our center performs CSF biomarker diagnosis for more than 500 patients per year. Close to all brain autopsies of patients with rapidly developing dementia suspected of CJD in Belgium are performed at the Antwerp University Hospital. He is the medical director of the IBB Biobank. He (co-)authored more than 300 international peer reviewed articles (21412 citations, h index 71, Google scholar 29/8/21). He was Chairman of the Ethics committee, Antwerp University Hospital (2000-2020) and University of Antwerp (2008-2020), a member of several committees of the High Council for Medicine (Hoge Gezondheidsraad), the National Bioethics Committee (Raadgevend Comité voor Bioethiek), previously chairman of the Belgian Board of Neurology and of the Neurology Committee of the Commission for Accreditation of Medical Doctors, as well as chairman of the European Board of Neurology (Union Européenne des Médecins Spécialistes) and Palliative Scientific Panel Chair of the European Academy of Neurology. His current research focuses on biomarkers, neuropathology and phenotype/genotype correlation of neurodegenerative diseases involving dementia and movement disorders. He has also lectured and published on the ethics of human experimentation, end-of-life decisions, euthanasia and research involving vulnerable subjects. He has served as principal investigator in numerous pharmaceutical industry sponsored studies with different compounds in Alzheimer’s and Parkinson’s disease.
Speaker Profile
Dr. Phillip Low
Dr. Phillip Low is Robert D and Patricia E Kern Professor of Neurology. His training and interests in autonomic testing and autonomic disorders began in Australia. He has been at Mayo Clinic, Rochester, Minnesota since 1976. At Mayo, he founded the Mayo Clinical Autonomic Laboratory in 1983. He ...
Dr. Phillip Low is Robert D and Patricia E Kern Professor of Neurology. His training and interests in autonomic testing and autonomic disorders began in Australia. He has been at Mayo Clinic, Rochester, Minnesota since 1976. At Mayo, he founded the Mayo Clinical Autonomic Laboratory in 1983. He headed an Autonomic Disorders Program Project followed by MSA Program Project and was PI of a randomized clinical trial of Rifampicin in MSA. His recent research, with Wolfgang Singer, has focused on biomarkers specific to MSA and phenoconversion of prodromal and preclinical MSA. The goal is to identify early, prodromal and preclinical MSA and couple that approach with finding effective treatment to slow/reverse progression of MSA.
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Elaine Douglas
Elaine has a master’s degree in communication and has worked in global health for over 23 years. She currently manages a clinical trial in Malawi for the University of Washington (though she now works part-time and from home). Elaine Douglas is the primary caregiver for her wife, Diane, who has ...
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Elaine has a master’s degree in communication and has worked in global health for over 23 years. She currently manages a clinical trial in Malawi for the University of Washington (though she now works part-time and from home). Elaine Douglas is the primary caregiver for her wife, Diane, who has MSA. She and Diane have two 23-year-old daughters who provide love and encouragement – as well as tangible support. They also have a strong community of family and friends who help tremendously.
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Elizabeth Coon, MD
I am a movement and autonomic specialist at Mayo Clinic in Rochester, MN. My clinical interests include multiple system atrophy and autonomic failure in movement disorders. My research interests include autonomic failure in the synucleinopathies. I am also interested in the history of neurology and ...
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I am a movement and autonomic specialist at Mayo Clinic in Rochester, MN. My clinical interests include multiple system atrophy and autonomic failure in movement disorders. My research interests include autonomic failure in the synucleinopathies. I am also interested in the history of neurology and gender issues in medicine. I am the mother of 4 boys and love to run and bike, especially with my boys.
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Erin Taylor, LICSW, MSW
Erin grew up in Rochester MN attending graduate school at University of St. Catherine’s/St. Thomas in St. Paul MN. She has worked within Medical Social Work for almost 20 years. Her background includes Nursing Home Social Work, Hospice Social Work, Trauma, Addictions and Mental Health. She is ...
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Erin grew up in Rochester MN attending graduate school at University of St. Catherine’s/St. Thomas in St. Paul MN. She has worked within Medical Social Work for almost 20 years. Her background includes Nursing Home Social Work, Hospice Social Work, Trauma, Addictions and Mental Health. She is married with 7 children and enjoys traveling.
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Erin Williams
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Gal Bitan, MD
Gal Bitan is a Professor of Neurology at UCLA who studies the phenomenon of abnormal protein aggregation in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, multiple system atrophy, and amyotrophic lateral sclerosis. Dr. Bitan received his PhD Summa cum Laude ...
Gal Bitan is a Professor of Neurology at UCLA who studies the phenomenon of abnormal protein aggregation in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, multiple system atrophy, and amyotrophic lateral sclerosis. Dr. Bitan received his PhD Summa cum Laude from the Hebrew University of Jerusalem. Before joining the faculty of the Medical School at UCLA, he did postdoctoral research at Harvard Medical School and its affiliated hospitals. Dr. Bitan has published about 140 research articles, reviews, and book chapters and has trained over 100 students, postdocs, and advanced researchers. He is a member of the editorial boards of several scientific journal and a frequent reviewer for many national and international journals and funding agencies.
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Gregory Pontone, M.D., M.H.S.
Gregory Pontone, M.D., M.H.S. is the director of the Parkinson’s disease Neuropsychiatry Clinic and an Associate Professor in the Departments of Psychiatry and Neurology at Johns Hopkins University School of Medicine in Baltimore, Maryland. After completing a medicine internship and residency ...
Gregory Pontone, M.D., M.H.S. is the director of the Parkinson’s disease Neuropsychiatry Clinic and an Associate Professor in the Departments of Psychiatry and Neurology at Johns Hopkins University School of Medicine in Baltimore, Maryland. After completing a medicine internship and residency training in psychiatry at Johns Hopkins, Dr. Pontone completed a two-year fellowship in geriatric psychiatry and movement disorders focusing on Parkinson’s disease through the Clinical Research Program of the Morris K. Udall Parkinson’s Disease Research Center. He also completed a fellowship in Clinical Trial Methods in Neurology sponsored by the National Institute of Neurological Disorders and Stroke. He is board certified by the American Board of Psychiatry and Neurology and has an added certification in the specialty of geriatric psychiatry. He serves on the Scientific Review Committee and as the chair of the Cognitive/Psychiatric Working Group for an international consortium of Parkinson's disease researchers, the Parkinson Study Group. He is an editorial board member for the American Journal of Geriatric Psychiatry.
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Ian Pickford
Ian is the husband and very willing full-time carer of Jackie who has MSA-C.They are not quite having the retirement they planned but love spending time together and have travelled extensively before and after the diagnosis. They do as much as they can in their circumstances and they are both ...
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Ian is the husband and very willing full-time carer of Jackie who has MSA-C.They are not quite having the retirement they planned but love spending time together and have travelled extensively before and after the diagnosis. They do as much as they can in their circumstances and they are both convinced that they will continue to be positive whatever the beast of MSA throws at them! They live in the UK and have been well supported by their NHS, the local hospice and the MSA Trust. They facilitate a support group for four counties within UK and have monthly Zoom meetings where an interesting speaker talks each month followed by round table discussions on whatever topic is relevant to their members.
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Jill Lyons
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Jim Davis, Patient
Jim is 66 years old, married and lives in the Central Texas area. He was diagnosed with MSA in the Spring of 2017. He thought he had had a stroke and after finding out that he had not he pursued further and found a neurologist who said it was probable MSA. Slurred speech and noticeable balance ...
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Jim is 66 years old, married and lives in the Central Texas area. He was diagnosed with MSA in the Spring of 2017. He thought he had had a stroke and after finding out that he had not he pursued further and found a neurologist who said it was probable MSA. Slurred speech and noticeable balance problems were the first main symptoms. He has participated in two clinical trials for drugs that were to help slow the progression of the disease. He has a son, step son, 2 daughter-in-laws, a grandson and a granddaughter. His wife, Milissa is 59 and they have been married (together) for 21 years. She is a retired high school math teacher. She is Jim's caregiver, but supported in this journey by their children, siblings and many friends. Milissa will join Jim in this session.
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Julia Landicho
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Kamal Shouman, MD
Dr. Shouman is an autonomic and peripheral nerve specialist at the Mayo Clinic, Rochester, MN. Dr. Shouman did his neurology residency at Wayne State University, Detroit, MI followed by a neuromuscular fellowship at Cleveland Clinic, Cleveland, OH and then fellowships in autonomic disorders and ...
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Dr. Shouman is an autonomic and peripheral nerve specialist at the Mayo Clinic, Rochester, MN. Dr. Shouman did his neurology residency at Wayne State University, Detroit, MI followed by a neuromuscular fellowship at Cleveland Clinic, Cleveland, OH and then fellowships in autonomic disorders and peripheral nerve at Mayo Clinic, Rochester, MN. Dr. Shouman has a special interest in autonomic neuropathies, peripheral neuropathies, and sweating disorders.
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Karen Walker
Karen Walker was appointed as Chief Executive Officer (CEO) in November 2015 having served as Interim CEO for the previous six months. She was a personal friend of the Trust’s founder, Sarah Matheson. Karen joined the Board in December 2009 as the Trustee representing the many Support Groups ...
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Karen Walker was appointed as Chief Executive Officer (CEO) in November 2015 having served as Interim CEO for the previous six months. She was a personal friend of the Trust’s founder, Sarah Matheson. Karen joined the Board in December 2009 as the Trustee representing the many Support Groups around the country, becoming Services Committee Chair in 2011 and in June 2014 was appointed as Chair of Resources, Audit and Governance – a role she stood down from in June 2015 to act as Interim CEO.
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Laura Rhee, MD
Dr. Rhee is a consultant and instructor in medicine at Mayo Clinic in Rochester, MN. Dr. Rhee is board certified in Internal Medicine and Hospice and Palliative Medicine. In addition, she is a Certified Hospice Medical Director. She is currently the director of the outpatient palliative medicine ...
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Dr. Rhee is a consultant and instructor in medicine at Mayo Clinic in Rochester, MN. Dr. Rhee is board certified in Internal Medicine and Hospice and Palliative Medicine. In addition, she is a Certified Hospice Medical Director. She is currently the director of the outpatient palliative medicine practice and also serves as one of the hospice medical directors for Mayo Hospice. Dr. Rhee has special interests in Neuro Palliative, Integrative Medicine and practice development.
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Lisa Hale, LMSW
Lisa Hale is a clinical social worker supporting Vanderbilt University Medical Center's Behavioral and Cognitive Division of Neurology. Lisa first became acquainted with MSA during the MSA Coalition Conference in 2017 in Nashville and is a member of the General Advisory Council. Lisa is honored ...
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Lisa Hale is a clinical social worker supporting Vanderbilt University Medical Center's Behavioral and Cognitive Division of Neurology. Lisa first became acquainted with MSA during the MSA Coalition Conference in 2017 in Nashville and is a member of the General Advisory Council. Lisa is honored to support MSA patients and their families throughout their journey.
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Liz Dyas
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Margaret Moutvic, MD
Dr. Maggie Moutvic is a graduate of Loyola University Stritch School of Medicine in Maywood, Illinois and completed PM&R residency at Mayo Clinic in Rochester. She is an Assistant Professor of Physical Medicine and Rehabilitation. Dr. Moutvic’s clinical interests include rheumatic disease and ...
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Dr. Maggie Moutvic is a graduate of Loyola University Stritch School of Medicine in Maywood, Illinois and completed PM&R residency at Mayo Clinic in Rochester. She is an Assistant Professor of Physical Medicine and Rehabilitation. Dr. Moutvic’s clinical interests include rheumatic disease and degenerative disorders of the nervous system. Dr Moutvic enjoys collaborating with colleagues within the framework of the Mayo Model of Care and helping patients incorporate non-pharmacologic interventions, such as exercise, into treatment as they live with chronic diseases.
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Margot Escott, MSW, LCSW
Margot Escott, MSW, LCSW is a clinical social worker in private practice in Naples for 35 years. She is a graduate of NYU School of Social Work. She has been working with people with Parkinson’s Disease and Care Partners for over 20 years. She was a care partner for her father who had Lewey Body ...
Margot Escott, MSW, LCSW is a clinical social worker in private practice in Naples for 35 years. She is a graduate of NYU School of Social Work. She has been working with people with Parkinson’s Disease and Care Partners for over 20 years. She was a care partner for her father who had Lewey Body Disease She is nationally known for her workshops on “The Healing Power of Laughter & Play”. She is an improviser and teaches applied improv in Naples, Florida. She developed one of the first national programs for “Improv for Persons with Parkinson’s and their Care Partners” and “Improv for Anxiety”. She also teaches Mindfulness in her improv classes. Her podcast, Improv Interviews, features national and international improvisers and therapists who use improv in their clinical practices. She has been named as Social Worker of the Year in Lee and Collier County. Her website is at improv4wellness.com
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Michael H. Silber, M.B.Ch.B.
Dr. Michael H. Silber attended medical school at the University of Cape Town. He trained in Neurology at Groote Schuur Hospital, Cape Town, and Mayo Clinic, Rochester, MN, USA. He is a Professor of Neurology in the Mayo Clinic College of Medicine and Science. He is a Past President of the American ...
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Dr. Michael H. Silber attended medical school at the University of Cape Town. He trained in Neurology at Groote Schuur Hospital, Cape Town, and Mayo Clinic, Rochester, MN, USA. He is a Professor of Neurology in the Mayo Clinic College of Medicine and Science. He is a Past President of the American Academy of Sleep Medicine, Past President of the American Board of Sleep Medicine and past Chair of the Sleep Medicine Fellowship Directors’ Council. He received the 2010 Nathaniel Kleitman Award from the American Academy of Sleep Medicine for distinguished service to the profession, the 2013 Sleep Science Award from the American Academy of Neurology, and the 2017 Excellence in Education Award from the American Academy of Sleep Medicine. His research interests include restless legs syndrome, REM sleep behavior disorder and narcolepsy and he has published over 120 peer reviewed publications, 30 book chapters and 3 books.
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Neil Versel
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Pam Bower
Pam has served on the Board of Directors as Secretary since 2013 and has led the Research Committee as Chair through seven research grant cycles. Liaising with the Scientific Advisory Board and adhoc peer review committee she administered the grant application and peer review process, culminating ...
Pam has served on the Board of Directors as Secretary since 2013 and has led the Research Committee as Chair through seven research grant cycles. Liaising with the Scientific Advisory Board and adhoc peer review committee she administered the grant application and peer review process, culminating in the awarding of over $2 million in research grants since 2013. She maintains an active presence on social media, sharing information and keeping up to date on the latest MSA research news. Her key goals are to encourage worldwide collaboration among the MSA community, promote more awareness, encourage grassroots fundraising and support researchers to find a cure. Pam was recognized by the global MSA community with the JP Schouppe “JiePie” Award for excellence in MSA Advocacy in 2012. She has been nominated four times for the WeGo Health Activist Awards, and was named WeGo Health’s “Best in Show – Facebook” in 2015.
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Patricia Libby
Patricia Libby lives in the Los Angeles community of Altadena, California. Her husband Joel Thvedt was diagnosed in 2015 with probable MSA-C following a year of unusual symptoms including sleep disturbances and gait and balance problems. Patricia and Joel immediately decided to do two things: (1) ...
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Patricia Libby lives in the Los Angeles community of Altadena, California. Her husband Joel Thvedt was diagnosed in 2015 with probable MSA-C following a year of unusual symptoms including sleep disturbances and gait and balance problems. Patricia and Joel immediately decided to do two things: (1) gather as much information as they could about MSA, and (2) travel as much as possible with their three sons. Joel battled MSA with grace and dignity, and a wonderful sense of humor, until his death in February 2020. Patricia and Joel met in 1984 when they were fellow students at UCLA Law School, and Patricia is currently an adjunct professor at the University of Southern California Gould School of Law and a legal writing coach in Los Angeles. Patricia served on the MSA Coalition’s General Advisory Council in 2020 and was delighted to join the Board in 2021 as the Interim Chair of the Advocacy Committee. She looks forward to continuing to help others in the MSA community as a tribute to Joel’s incredible attitude and positive outlook throughout his MSA journey.
Speaker Profile
Pierre-Olivier Fernagut, PhD
I Graduated in 2003 from the university of Bordeaux (France) where I did my PhD on the development of mouse models of MSA. After a post-doctoral fellowship in the department of Neurology at UCLA where I worked on interactions between alpha-synuclein and pesticides, I was appointed in 2007 as a ...
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I Graduated in 2003 from the university of Bordeaux (France) where I did my PhD on the development of mouse models of MSA. After a post-doctoral fellowship in the department of Neurology at UCLA where I worked on interactions between alpha-synuclein and pesticides, I was appointed in 2007 as a researcher at the French national center for scientific research. My research interests are to identify disease mechanisms and operate the preclinical validation of disease-modifying strategies in MSA. I serve as the coordinator of the scientific advisory board at ARAMISE (French MSA association)
Speaker Profile
Rene Utianski, PhD
Rene L. Utianski, Ph.D., CCC-SLP is a Senior Associate Consultant in the Division of Speech Pathology at Mayo Clinic in Rochester, Minnesota. She is an Associate Professor of Speech Pathology and Assistant Professor of Neurology in the Mayo Clinic College of Medicine. Her clinical responsibilities ...
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Rene L. Utianski, Ph.D., CCC-SLP is a Senior Associate Consultant in the Division of Speech Pathology at Mayo Clinic in Rochester, Minnesota. She is an Associate Professor of Speech Pathology and Assistant Professor of Neurology in the Mayo Clinic College of Medicine. Her clinical responsibilities include differential diagnosis of acquired and degenerative speech and language disorders. Her research focus is to define the distinguishing clinical characteristics of these neurological disorders to inform expeditious differential diagnoses. She has a particular interest in the lived experience of patients and the ways in which speech-language intervention can support individuals with progressive diseases.
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Robin Riddle
Robin 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 ...
Robin Riddle
Speaker Profile
Samantha Pavey
Samantha is the nurse specialist for the South of England. She trained at Addenbrookes Hospital in Cambridge and has over 25 years of experience. She has worked in neurology most of her career, including Atkinson Morley’s Hospital in Wimbledon and later as a Ward Sister in Hertfordshire. She has ...
Samantha Pavey
Samantha is the nurse specialist for the South of England. She trained at Addenbrookes Hospital in Cambridge and has over 25 years of experience. She has worked in neurology most of her career, including Atkinson Morley’s Hospital in Wimbledon and later as a Ward Sister in Hertfordshire. She has worked in the hospice setting and within the charity sector at management level. Most recently she worked as a Parkinson’s Disease Nurse Specialist and undertook further studies at London South Bank University.
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Sheila Lyons, Executive Director
Sheila Lyons has more than 20 years of extensive non-profit experience as well as strategic, fundraising and financial leadership. She most recently served as Executive Director of Apollo, where she led the Chicago arts organization through a strategic planning process that revitalized the ...
Speaker
Sheila Lyons has more than 20 years of extensive non-profit experience as well as strategic, fundraising and financial leadership. She most recently served as Executive Director of Apollo, where she led the Chicago arts organization through a strategic planning process that revitalized the 147-year-old organization. She previously launched an Associate’s Degree in Entrepreneurship at City Colleges of Chicago, served as the first executive director at the Triad Entrepreneurial Initiative, and was a consultant with Arthur Andersen, LLC..
Speaker Profile
Tom Chelimsky, MD
Tom Chelimsky, MD, Medical College of Wisconsin is a neurologist who works with adults and children, along with specialists in many disciplines, to diagnose, manage, teach and study disorders of the autonomic nervous system
Speaker
 Tom Chelimsky, MD, Medical College of Wisconsin is a neurologist who works with adults and children, along with specialists in many disciplines, to diagnose, manage, teach and study disorders of the autonomic nervous system
Speaker Profile
Tom Tait
Tom was the caregiver to his wife Liz during her 5 year journey with Multiple System Atrophy – Cerebellum (MSA-C). He has participated in numerous seminars pertinent to brain disease caregiving and has been attending Carepartners of People with MSA support group webinar since 2014. He has been ...
Speaker
Tom was the caregiver to his wife Liz during her 5 year journey with Multiple System Atrophy – Cerebellum (MSA-C). He has participated in numerous seminars pertinent to brain disease caregiving and has been attending Carepartners of People with MSA support group webinar since 2014. He has been facilitating the call since 2018 and co-facilitates a Men’s Only Care Partners of People with PSP/MSA/CBD support group. He is able to share his invaluable experience, knowledge and tips to assist others that are on the same journey he took with his wife. He currently works part time and is a Bayada Hospice and CurePSP volunteer.
Speaker Profile
Topher Schott
My mother was diagnosed with multiple system atrophy in the summer of 2017. I have really appreciated the support network MSA Coalition offers in the “onboarding phase” of MSA. I have attended the last three in-person Patient & Family Conferences in Nashville, San Francisco, and Orlando. ...
Speaker
My mother was diagnosed with multiple system atrophy in the summer of 2017. I have really appreciated the support network MSA Coalition offers in the “onboarding phase” of MSA. I have attended the last three in-person Patient & Family Conferences in Nashville, San Francisco, and Orlando.Given that my mother lives in Maine and I live in the DC metro area, my relationship as caregiver may be unique. My siblings and I have “spread the wealth” in taking care of the business – one takes on “moving to single level housing,” another takes on doctors’ appointments in Boston, and I took on “fun committee.” It is always important to enjoy life, but even more important to cherish the fun times once diagnosed with such a crappy disease like MSA.
Speaker Profile
Tricia Stevens, RN, BSN
Tricia Stevens, RN, BSN received her Bachelor of Science degree from Winona State University and has more than 25 years nursing experience. She has cared for neurology patients for ten years; over the past two years, she has been an autonomic nurse and a member of the Multiple System Atrophy (MSA) ...
Speaker
Tricia Stevens, RN, BSN received her Bachelor of Science degree from Winona State University and has more than 25 years nursing experience. She has cared for neurology patients for ten years; over the past two years, she has been an autonomic nurse and a member of the Multiple System Atrophy (MSA) Care Team. Previously, she was a lumbar puncture nurse and was involved in Parkinson clinical trials as a study coordinator.
Speaker Profile
Vik Khurana, MD
Vikram Khurana is on the faculty at Harvard Medical School, an attending neurologist at Brigham and Women’s Hospital and scientific co-founder of Yumanity Therapeutics. He is a medical graduate of the University of Sydney, Australia, and came to Boston as a Fulbright Scholar in 2001, obtaining ...
Vik Khurana
Vikram Khurana is on the faculty at Harvard Medical School, an attending neurologist at Brigham and Women’s Hospital and scientific co-founder of Yumanity Therapeutics. He is a medical graduate of the University of Sydney, Australia, and came to Boston as a Fulbright Scholar in 2001, obtaining his Ph.D. in neurobiology from Harvard University in 2006. He completed his residency in neurology at Brigham and Women’s and Massachusetts General Hospitals, and Fellowship training in movement disorders and ataxia at Massachusetts General Hospital. He received postdoctoral scientific training in the laboratories of Susan Lindquist and Rudolf Jaenisch at the Whitehead Institute, where he co-led a study that succeeded in identifying and reversing pathologies in stem cell models of Parkinson's disease (Chung*, Khurana* et al. Science 2013). Vik co-founded Yumanity Therapeutics in December 2014, a company that applies stem-cell technologies to drug discovery in neurodegenerative diseases (http://yumanity.com/about-leadership.php), and joined the Ann Romney Center and Harvard Stem Cell Institute in 2016.