Chair: Serge Przedborski, MD, PhD
Co-Chair: Oscar Gershanik, MD
Anders Björklund, MD, Ph.D
Paolo Calabresi, MD
Marie-Francoise Chesselet, MD, PhD
Ted Dawson, MD, PhD
Stanley Fahn, MD
Edward Fon, MD, FRCP(C)
Karl Friedl, PhD
Thomas Gasser, MD
Etienne Hirsch, PhD
Ryuji Kaji, PhD
Jeffrey Kordower, PhD
Serge Przedborski, MD, PhD (Chair)
Beth-Anne Sieber, PhD
Maria Spillantini, PhD
Miquel Vila, MD, PhD
Khailash Bhatia, MD
David Brooks, MD, DSc
Steve Frucht, MD
Victor Fung, MD
Oscar Gershanik, MD (Co-Chair)
Joseph Jankovic, MD
Ann-Louise LaFontaine, MD
Anthony Lang, MD
Irene Litvan, MD
Laura Marsh, MD
Michel Panisset, MD
Werner Poewe, MD
Louis Tan, MD
Eduardo Tolosa, MD
Bonnie Bereskin, Med, SLP
Bastiaan Bloem, MD, PhD (Co-chair)
Alessandro DiRocco, MD
Terry Ellis, PhD, PT
Sandra Funk, BSW, RSW
Monique Giroux, MD
Ruth Hagestuen, RN
Robert Iansek, MD
Lucie Lachance, RN
Margarita Makoutonina, OT
Linda Morgan, R.Ph, MBA
Marten Munneke, PT, PhD
Jon Stamford, MD
Alice Templin, BSc (PT)
Linda Morgan, RPh, MBA
Israel Robledo (Co-chair)
Serge Przedborski, MD, PhD (US) is the Page and William Black Professor of Neurology. He holds a joint appointment in the Departments of Neurology, Pathology and Cell Biology and is the Co-Director of the Center for Motor Neuron Biology and Disease and a faculty member of the Center for Parkinson's disease (PD) and Other Movement Disorders at Columbia University. Dr. Przedborski attended medical school at the Université Libre de Bruxelles (ULB), Belgium, and did his internship and residency in Neurology and Psychiatry at the ULB-Erasme Academic Medical Center, Belgium. He then did a fellowship in movement disorders with Dr. Stanley Fahn at Columbia University, where he became Assistant Professor of Neurology in 1991. The research conducted in Dr. Przedborski's laboratory is geared toward unraveling the molecular basis of neurodegeneration and devising therapeutic strategies to hamper the processes that cause neuronal death, the source of many debilitating disorders. In keeping with this goal, to what extent and by which mechanisms do cell-autonomous and non-cell autonomous deleterious processes contribute to the demise of specific subpopulation of neurons in neurodegenerative disorders, such as PD represent a main line of research in his laboratory. These research efforts are supported by federal grants from both NIH and the DoD and by private agencies including the Parkinson's Disease Foundation, the Thomas Hartman Foundation, and MDA's Wings Over Wall Street. Dr. Przedborski is a Senior Editor for the Journal of Neuroscience and an Associate Editor of Movement Disorders.
Oscar S. Gershanik, MD (Argentina) is presently Professor of Neurology at the University of Buenos Aires, Medical School. He is also Scientific Director, Institute of Neuroscience, Favaloro Foundation University Hospital. He was formerly the Chairman of the Department of Neurology at the French Hospital in Buenos Aires, and Director of the Post-graduate Training Program in Neurology at the University of Buenos Aires until 2008. In addition he is Director of the Laboratory of Experimental Parkinsonism at the Institute of Pharmacological Research of the Argentine Research Council of Science and Technology. His clinical and basic research group held for 10 years the designation of "Center of Excellence” by the National Parkinson Foundation (Miami, Fla., USA)
Prof. Gershanik graduated with honors as an MD in 1972 from the University of Buenos Aires Medical School. He trained in Neurology at the French Hospital in Buenos Aires under Professor A. Thomson. He obtained his Certificate in Adult Neurology from the Argentine Ministry of Health in 1979.
From 1978 to 1979 he was a visiting research fellow in the Department of Neurology, Mt. Sinai School of Medicine, New York under Dr. Melvin D. Yahr, and from 1981 to 1982 he returned to the USA this time as Visiting Associate Professor of Neurology in the Department of Neurology, University of Medicine and Dentistry of New Jersey, Rutgers Medical School working under Dr. Roger C. Duvoisin. Upon his return to Argentina he was appointed Section Chief in the Extrapyramidal Diseases Section of the Department of Neurology, French Hospital Buenos Aires, a position he held until becoming Chairman of the Department in 2003, position he maintained until 2008 when he became Scientific Director of the Favaloro Foundation Institute of Neuroscience.
Prof. Gershanik's research interests have always been related to the field of Parkinson's disease and movement disorders, with special emphasis in early-onset PD, drug-induced movement disorders and in later years in Tourette's syndrome. His contributions in basic research have been focused on dopamine receptor pharmacology, dopamine receptor interactions, and the role of the different subtypes of dopamine receptors in the control of motor behavior in animal models of PD. His research has also contributed to dispel the concept of "in vivo” levodopa toxicity and is presently oriented to explore the expression of genes related to trophism and plasticity by this drug, the use of trophic factors to induce neuroprotection and neurorescue in animal models of PD, and basic mechanisms of dopa-induced dyskinesia.
Prof. Gershanik actively participates in medical societies, having served in the International Executive Committee of the Movement Disorder Society. He is at present Treasurer of the Movement Disorder Society, was Co-chair of the Congress Scientific Program Committee of MDS for the XIVth. International Congres, and a member of the Editorial Board of Movement Disorders. In addition he serves in the Editorial Board of Parkinsonism and Related Disorders, and is Regional Editor of the international journal Basal Ganglia. He is also a member of the Research Committee on Parkinson's Disease and Extrapyramidal Disorders of the World Federation of Neurology. He also serves in the Physician Advisory Board of the International Tremor Foundation.
Bastiaan R. Bloem, MD, PhD (The Netherlands) is a consultant neurologist at the Department of Neurology, Radboud University Nijmegen Medical Centre, the Netherlands. He received his M.D. degree (with honour) at Leiden University Medical Centre in 1993. In 1994, Professor Bloem obtained his PhD degree in Leiden, based on a thesis entitled "Postural reflexes in Parkinson's disease”. He was trained as a neurologist between 1994 and 2000, also at Leiden University Medical Centre. He received additional training as a movement disorders specialist during fellowships at ‘The Parkinson's Institute', Sunnyvale, California (with Dr. J.W. Langston), and at the Institute of Neurology, Queen Square, London (with Prof. N.P. Quinn and Prof. J.C. Rothwell). In 2002, he founded and became Medical Director of the Parkinson Centre Nijmegen (ParC), which was recognised from 2005 onwards as centre of excellence for Parkinson's disease. Together with Dr. Marten Munneke, he also developed ParkinsonNet, an innovative healthcare concept that now consists of 64 professional networks for Parkinson patients covering all of the Netherlands ( www.parkinsonnet.nl ). In September 2008, he was appointed as Professor of Neurology, with movement disorders as special area of interest. He is currently President of the International Society for Gait and Postural Research, and is on the editorial board for several national and international journals. Since 2009, he is member of the European Section Executive Committee of the Movement Disorder Society. In 2009, he also joined the board of ZonMw (The Netherlands Organisation for Health Research and Development). He currently has two main research interests: cerebral compensatory mechanisms, especially in the field of gait & balance; and healthcare innovation, aiming to develop and scientifically evaluate patient-centred collaborative care. For this latter purpose, Professor Bloem co-founded MijnZorgnet (together with Prof. Jan Kremer), a service provider that delivers web-based communities for both patients and health professionals. Professor Bloem has published over 300 publications, including more than 230 peer-reviewed international papers.
Israel Robledo (US) was diagnosed with Parkinson's disease in 2007 at age 42. He became involved in advocacy work with the Parkinson's Disease Foundation and their inaugural Clinical Research Learning Institute. He is now a part of the inaugural PDF Parkinson Advocacy in Research (PAIR) program. His areas of interest include educating the minority community about being actively involved in their health care and advocating for reimbursement of clinical trial-related expenses for participants. Israel is an elementary school reading specialist in Midland, Texas. He is married to Christi and has three daughters Amber, Ashley, Alisha and one grandson, Landon.
Bonnie Bereskin, M.Ed, SLP (Canada) is the Professional Practice Leader in Speech-Language Pathology at Baycrest Centre in Toronto, Ontario. She has many years experience in working with individuals with Parkinson's, training SLP students from the University of Toronto at Baycrest, and in treating individuals with Parkinsonism in her own private practice. Bonnie is an LSVT clinician and uses an eclectic approach to helping her clients and families maintain communication and involvement in activities. She has developed self-management programs for Parkinson's that combine therapy, education, support and fun. In recent years her work and research has focused on developing ongoing and cost effective SLP services for the treatment of the speech problems of Parkinson's by using volunteer support and technology.
Kailash P. Bhatia, MD, DM, FRCP (UK) is a Professor of Clinical Neurology in the Sobell Department of Movement Neuroscience at the Institute of Neurology, UCL, Queen Square, London and an Honorary Consultant Neurologist at the affiliated National Hospital for Neurology, Queen Square. Prof Bhatia obtained his basic medical degree and neurology training in Mumbai India and further training in neurogenetics and movement disorders with the late Professor's Anita Harding and David Marsden. He is a Fellow of the Royal College of Physicians and corresponding Fellow of the American Academy of Neurology and ANA. His main research interest is in movement disorders, merging clinical, electrophysiological, and genetic methods to study the pathophysiology of conditions like dystonia and Parkinson's disease. Professor Bhatia has over 350 publications including 250 peer reviewed papers. He is the current Associate Editor of the International Movement Disorders Journal and is on the referee panel of 8 neurology journals including Brain, Annals of Neurology and JNNP. He is a grant reviewer for Telethon, Inserm France, UK PD society and a medical advisor to the UK Dystonia society. He is the current chairman of the Movement Disorders subcommittee of the European Neurological Society (ENS), and member of EFNS Education Committee and has served on various committees of the International Movement Disorders Society.
Anders Björklund, MD, PhD (Sweden) has been researching reparative and neuroprotective mechanisms in the CNS using cell replacement and gene transfer techniques. In the 1970s his group pioneered studies of neural transplantation to the brain, and developed techniques for cell replacement in animal models of Parkinson's disease. Over the last 15 years the Lund neural transplantation program, headed by Professor Olle Lindvall, has been one of the leading clinical programs for the development of restorative therapies in Parkinson's disease.
Current research at the Wallenberg Neuroscience Center is focused on the use of neural stem cells and viral vector-mediated gene transfer for neuroprotection and brain repair, with the aim to develop new therapeutic approaches for Parkinson's disease and other neurodegenerative disorders.
David J Brooks, MD DSc FRCP FMed Sci (UK) is Hartnett Professor of Neurology and Head of the Centre for Neuroscience in the Department of Medicine, Imperial College, London. He is also a Senior Neurologist in Global Clinical Development, Medical Diagnostics, GE Healthcare PLC.
He has been a member of the Research Advisory Panels of the UK Parkinson's Disease Society, the German Dementia and Parkinson Networks, and Inserm. He has been a member of the Scientific Advisory Board of the Michael J. Fox Foundation for Parkinson's Disease Research (2002-2006), UK Medical Research Council Neuroscience and Mental Health Board (2004-2007), UK Huntington's Disease Association, and was Chairman of the Scientific Issues Committee of the Movement Disorder Society (1998-2002) and a Director of the International Society of Cerebral Blood Flow and Metabolism (1993-1997). He was Chairman of the Council of Management of the UK Parkinson's Disease Society 1997-1998.
He is on the Editorial Boards of Brain, Journal of Neural Transmission, Synapse, Molecular Imaging and Biology, Neurotherapeutics and Current Trends in Neurology, and was on the editorial boards of the Journal of Neurology, Neurosurgery, and Psychiatry 1998-2004 and Movement Disorders 1994-1998.
In 2001 he was elected a Fellow of the Academy of Medical Science, UK. In 2002 he was invited to give the Stan Fahn Lecture at the International Congress of Movement Disorders, Miami, in 2003 the George Cotzias Lecture in Madrid, in 2004 the Charles E Wilson Lecture, the Psychobiology Institute, Jerusalem March 2004, in 2005 the Kuhl-Lassen lecture at the Society of Nuclear Medicine, Toronto, and in 2006 the Sprague lecture at UC Irvine.
His research involves the use of positron emission tomography and magnetic resonance imaging to diagnose and study the progression of Alzheimer's and Parkinson's disease and their validation of bio-markers therapeutic trials. To date, he has published over 300 reports in peer reviewed journals, including Nature and Science. His research is supported by grants from the UK Medical Research Council, the Alzheimer's Research Trust, UK Parkinson's Disease Society, the Michael J Fox foundation, and industry.
Paolo Calabresi, MD (Italy) is full Professor of Neurology and Chairman of Neurology at the University of Perugia (Italy). He is author of more than 300 papers on leading international journals in the field of neurology and neuroscience. His major interest has been the characterization of striatal synaptic plasticity and the role of dopamine and glutamate in corticostriatal long-term depression (LTD) and long-term potentiation (LTP). In the last years his group has analysed the changes of these forms synaptic plasticity in experimental models of Parkinson's disease and L-DOPA-induced dyskinesia as well as the molecular mechanisms underlying the motor alterations in these pathological conditions.
Fulvio Capitanio (Spain) is an economist and ITC manager. He was diagnosed with Parkinson's in 2007 and retired from his job in 2009. In January of 2008, with a group of PD friends he met over the Internet, he started an online organization called "Unidos contra el Parkinson” (together against Parkinson's disease) at http://portal.unidoscontraelparkinson.com.
In October 2009 Fulvio coordinated the group's Second International Meeting in Spain dedicated to promote the importance of complementary therapies in PD treatment. In March 2010 Unidos contra el Parkinson edited a comic "Through the eyes of a child” to help parents to explain PD to their children. In April 2010 started the project "Run 4 PD”, a worldwide event involving cities from different countries to run and walk miles to raise awareness on PD.
Fulvio is now dedicated to help and assess young onset people with PD.
Hayley Carpenter (US) is the Director of Outreach at the Parkinson’s Action Network (PAN) where she oversees the organization’s national grassroots advocacy program, comprised of tens of thousands of advocates who fight for federal research funding and strong policy support for the Parkinson’s community. Hayley joined PAN in 2006 as a Program Assistant and was promoted to her current position in 2008 where she has formalized the program and recently overhauled the grassroots leadership program to more effectively address the ever-changing federal policy climate. She is a graduate of Virginia Tech, and volunteers with youth programs in the greater Washington, DC, area throughout the year. Hayley's passion for her work and commitment to the Parkinson’s community stems from her relationship with her grandfather, who was diagnosed with Parkinson's when Hayley was a teenager. Hayley has been featured in the European Parkinson’s Disease Association magazine, gives talks to support groups across the country, and has spoken at the World Parkinson Congress.
Marie-Francoise Chesselet, MD, PhD (US) received her M.D. and Ph.D. degrees from the University of Paris VI, in France. She completed her internship at the Hopital de l'Hotel Dieu in Paris and her PhD thesis in the laboratory of Jacques Glowinski at the College of France. After obtaining a position at the CNRS, she joined the laboratory of Ann Graybiel at MIT and the laboratory of Michael Bronstein at the NIH as a Visiting Scientist. She held faculty appointments at the Medical College of Pennsylvania and the University of Pennsylvania before joining UCLA as the Charles H. Markham Professor of Neurology in 1996. She is currently Chair of the Department of Neurobiology in the David Geffen School of Medicine at UCLA. She is also Director of the APDA Advanced Center for Parkinson's Disease Research, Morris K. Udall Center of Excellence for Parkinson's Disease Research and the Center for Gene Environment Studies in Parkinson's Disease at UCLA.
Ted M. Dawson, MD, PhD (US) is the Leonard and Madlyn Abramson Professor in Neurodegenerative Diseases in the Departments of Neurology and Neuroscience and the Graduate Program in Cellular & Molecular and the Institute for Cell Engineering at the Johns Hopkins University School of Medicine. He is the Scientific Director of the Institute for Cell Engineering and he is the Director of the Johns Hopkins University School of Medicine's Morris K. Udall Parkinson's Disease Research Center of Excellence. Dr. Dawson is world-renowned for his novel contributions on the role of nitric oxide in neuronal injury. He has published over 400 full-length manuscripts and review articles. He is one of the top five cited Neuroscientists in the last decade. Dr. Dawson has won several awards including the Derek Denny-Brown Young Neurological Scholar Award, the Paul Beeson Physician Faculty Scholar Award, the Santiago Grisolia Medal and the ISI Highly Cited Researcher Award. He was elected to the Association of American Physicians and he is a Fellow of the American Association for the Advancement of Science. He is the Chairman of Scientific Advisory Board of the Bachman-Strauss Dystonia and Parkinson Foundation and serves on the Medical Advisory Board of the Society for Progressive Supranuclear Palsy and he is a member of the Faculty of 1000 Biology Neurobiology of Disease and Regeneration Section of the Neuroscience Faculty. Many advances in neurobiology of disease have stemmed from Dr. Dawson's identification of the mechanisms of neuronal cell death and the elucidation of the molecular mechanisms of neurodegeneration. He pioneered the role of nitric oxide in neuronal injury in stroke and excitotoxicity and elucidated the molecular mechanisms by which nitric oxide and poly (ADP-ribose) polymerase and apoptosis inducing factor kills neurons. His studies of nitric oxide led to major insights into the neurotransmitter functions of this gaseous messenger molecule. He discovered the neurotrophic properties of non-immunosuppressant immunophilin ligands. Dr. Dawson has been at the forefront of research into the biology and pathobiology of the proteins and mutant proteins linked to Parkinson's disease. These studies are providing major insights into understanding the pathogenesis of PD and are providing novel opportunities for therapies aimed at preventing the degenerative process of PD and other neurodegenerative disorders.
Alessandro Di Rocco, MD (US) graduated from the University of Genova, Italy, and completed his residency in Neurology and a fellowship in Movement Disorders and Geriatric Neurology with Dr. Melvin D. Yahr and Dr. Warren Olanow at Mount Sinai Medical Center in New York. He is currently Professory of Neurology and Chief of the Division of Movement Disorders at New York University School of Medicine and Director of the NYU Parkinson and Movement Disorders Center, a National Parkinson Foundation Center of Excellence. Dr. Di Rocco has been the principal investigator or a co-investigator in a number of clinical research studies focused on the cognitive and psychiatric complications of PD and on developing new models of care for patients with PD and their families, particularly for those with more advanced disease. He is also actively engaged in national and international programs to promote education on PD and improve quality of care and access to medical services. He is a member of several public and private panels and commissions, and serves as president of the Melvin Yahr International Parkinson's Disease Foundation, an organization that works closely with the World Federation of Neurology to support the work and education of young Parkinson investigators worldwide.
Terry Ellis, PhD, PT (US) is a Clinical Associate Professor at Boston University, College of Health & Rehabilitation Sciences: Sargent College in the Department of Physical Therapy & Athletic Training. Dr. Ellis is also the Co-Director of the Center for Neurorehabilitation at Boston University where she conducts research, provides clinical consultations and education to healthcare professionals and to persons with neurological disorders. In addition, Dr. Ellis directs the APDA National Rehabilitation Resource Center housed at Boston University. Her research focuses on investigating the effects of exercise and rehabilitation on disability in individuals with Parkinson's disease. Dr. Ellis has a Ph.D. in Behavioral Neurosciences from Boston University School of Medicine. In addition, she is a board certified specialist in Neurologic Physical Therapy.
Stanley Fahn, MD (US) Dr. Stanley Fahn, founder and President of the World Parkinson Coalition, and co-chair of the first two World Parkinson Congresses, will stay on board as co-chair of the WPC 2013.
When asked about this role with the WPC, he said, "I am honored and pleased to co-chair the third World Parkinson Congress with Dr. Stoessl. I look forward to seeing the WPC 2013 expand beyond what the first two WPCs offered to make the experience for delegates as rich as possible with opportunities to learn about the latest science and to meet a wider array of members of the Parkinson's community than they would find at any other Parkinson's meeting today. Allowing people with PD, neuroscientists, rehab specialists, clinicians and others to interact with each other is such a special experience and one that many delegates will remember for years following the Congress. The enthusiasm and "buzz” generated by people with Parkinsons at the first two Congresses made those events extremely exciting. I expect the same at WPC2013, and I am delighted to be a part of this Congress and look forward to seeing many familiar and new faces in Montreal in October 2013.”
Dr. Fahn is the H. Houston Merritt Professor of Neurology and Director of the Center for Parkinson's Disease and Other Movement Disorders at Columbia University Medical Center . He is the Past-President of the American Academy of Neurology (AAN). He founded the Movement Disorder Society and served as the Chairman of its Steering Committee and was elected its first president. He was the founding co editor of the journal Movement Disorders, and also served as Associate Editor of Neurology for 10 years.
Dr. Fahn has twice served as Chairman of the Advisory Committee on Peripheral and Central Nervous System Drugs for the Food and Drug Administration. He currently serves on an NIH Oversight Committee to review and give advice on clinical trials on neuroprotection for PD. Dr. Fahn and his scientific colleagues at Columbia University were awarded a Morris K. Udall Parkinson's Disease Research Center of Excellence by the National Institutes of Health in 1999, and it is currently ongoing. Dr. Fahn organized and executed the development of the Unified Parkinson's Disease Rating Scale (UPDRS) and modified and popularized the use of the Schwab England ADL score for global severity of this disease. Both of these rating scores are used worldwide, the former to determine the severity of PD, and the latter as a measure of quality of life. He has participated in many clinical trials of a variety of pharmacotherapeutic agents for PD.
Along with Dr. Ira Shoulson; Dr. Fahn was a co founder of the Parkinson Study Group (PSG), a consortium of clinical investigators dedicated to conduct controlled clinical trials on the prevention and treatment of Parkinson's disease. He has received numerous honors and delivered many titled lectures at a variety of universities around the world.
Edward Fon, MD, FRCP(C) (Canada) is an Associate Professor in the Department of Neurology & Neurosurgery at McGill University. He is Attending Neurologist at the Montreal Neurological Institute and Hospital and Director of the McGill Parkinson Program, a National Parkinson Foundation Center of Excellence.
Dr. Fon is a Clinician-Scientist whose research focuses on the molecular events leading to the degeneration of dopamine neurons in Parkinson's disease. In the past decade, several genes have been identified that cause forms of the disease. He is particularly interested in how these genes come together and interact to cause PD. His work has focused on one of these genes, parkin, which functions as a key enzyme in the main protein degradation pathway in the cell. This pathway utilizes ubiquitin, a protein that can mark target proteins for degradation. Dr. Fon's lab has been working on understanding the various functions of ubiquitin in the nervous system and on how defects in parkin could lead to Parkinson's disease. Dr. Fon's work in this area could provide important clues about the mechanisms of dopamine neuron death in Parkinson's disease and potentially lead to innovative new therapeutic strategies. His work has been published in several prestigious journals including Nature Cell Biology , Molecular Cell , Neuron and Human Molecular Genetics.
Dr. Fon is currently Chair of the Scientific Advisory Board, Parkinson Society Canada. He is a member of the editorial board of the Journal of Biological Chemistry . He has received many awards during the course of his career including the CIHR Clinician-Scientist award, the Prix de Jeune Chercheur Blaise Pascal and the EJLB Foundation Scholar. He is currently a Chercheur-Boursier Senior of the FRSQ. Dr. Fon's research is supported by the Canadian Institutes of Health Research (CIHR), the Centers of Excellence in Commercialization and Research (CECR), Prionet Canada (NCE) and the Michael J. Fox Foundation.
Karl Friedl, Ph.D. (US) holds a Ph.D. in Physiology from the University of California at Santa Barbara. His early research on steroid hormones and responses to military stressors at the Department of Clinical Investigation, Madigan Army Medical Center, in Tacoma, Washington, was followed by research on body composition and nutrition at the United States Army Research Institute of Environmental Medicine, in Natick, Massachusetts. As the Director of the Military Operational Medicine Research Program at the United States Army Medical Research and Materiel Command, he established a coordinated plan of biomedical research on protection and enhancement of the Soldier, instituted program-level external scientific review of research, and expanded inter-service cooperation and collaborative projects with other federal agencies including the Department of Veteran's Affairs, National Institutes of Health, National Aeronautics and Space Agency, and the United States Department of Agriculture. COL Friedl previously served as Commander of the U.S. Army Research Institute of Environmental Medicine, the lead federal laboratory for human performance research, and is currently the Director of the Telemedicine and Advanced Technology Research Center (TATRC) at Fort Detrick, Maryland. He has published over 100 papers including 70 original reports, 18 book chapters, and other reviews and technical reports. COL Friedl has been responsible for management of greater than three billion dollars of research funding. COL Friedl received recognition from members of Congress for his work on Gulf War Illnesses research and the Parkinson's disease related research program: the Neurotoxin Exposure Treatment Research Program.
Steve Frucht, MD (US) is Professor of Neurology and Director of Movement Disorders in the Robert and John M. Bendheim Parkinson and Movement Disorders Center at Mount Sinai Medical Center. A native New Yorker, he received his undergraduate and medical degrees at Harvard before training in neurology at New York Hospital where he served as chief resident. After completing training in Clinical Movement Disorders at Columbia University, he joined the Columbia faculty where he remained until his appointment at Mount Sinai.
In addition to evaluating the full spectrum of patients with movement disorders, his research interests focus on the evaluation and treatment of hyperkinetic movement disorders, specifically task-specific dystonia affecting musicians (an area of interest given his training as a classical musician), myoclonus and tremor.
Dr. Frucht serves as a permanent member of the NIH K-award study section for neurology. He has participated in numerous clinical trials, published over 100 peer-reviewed articles, and authored two textbooks.
Dr. Frucht has lectured nationally and internationally in courses sponsored by the American Academy of Neurology and International Movement Disorders Society.
Victor Fung, MBBS (Hons) PhD FRACP (Australia) is Clinical Associate Professor at Sydney Medical School, The University of Sydney and Director of the Movement Disorders Unit and Co-Director of the Parkinson's Disease and Movement Disorders Research Centre, Department of Neurology, Westmead Hospital. He is President of the Movement Disorder Society of Australia and Secretary-elect of the Asian & Oceanian Section of the international Movement Disorder Society, and also serves on its Educational Committee and the Bylaws Committee. He has been on the Editorial Board of the journal Movement Disorders. He was the founding Chairperson of the Movement Disorder Society of Australia Clinical Research and Trials Group from 2001-2007 and on the Management Board of Neuroscience Trials Australia from 2003-2007. He is a member of the Parkinson's Australia Scientific Committee and Parkinson's NSW Advisory Board.
Sandra L. Funk, BSW, RSW (Canada) is a graduate from the School of Social Work, University of Manitoba. She has over 25 years of clinical social work experience with chronic and neurological conditions. Currently, Sandra is the Social Worker for the Movement Disorder Clinic in Winnipeg and the Director of the Manitoba Huntington Disease Resource Centre, Huntington Society of Canada. She has participated in a number of committees on both local and National levels, written several articles and given numerous presentations on a variety of subjects relevant to those living with Huntington disease, Parkinson's disease and Chronic Lung Disease.
Thomas Gasser, MD (Germany) is Professor of Neurology at the University of Tübingen, Director of the Department of Neurodegenerative Diseases at the Hertie-Institute for Clinical Brain Research and Chairman of the German Center of Neurodegenerative Diseases in Tübingen.
Prof. Gasser studied medicine at the University of Freiburg, Germany, and at Yale University Medical School, New Haven Connecticut . He received his professional training in psychiatry at the Max Planck-Institute of Psychiatry in Munich and in Neurology at the Department of Neurology of the Ludwig-Maximilians University in Munich . From 1991 to 1993 he trained as a post-doctoral fellow with a stipend of the German Research Foundation at the Neuroscience Center, Massachusetts General Hospital and Harvard Medical School, in Boston in the laboratory of Prof. Xandra Breakefield. He returned to Munich to become assistant professor in Neurology and head of the Neurogenetics Unit as well as the Movement Disorders Outpatient Unit at the Department of Neurology of Munich University . In 2002, he became head of the Department of Neurodegenerative Diseases of the Hertie-Institute of Clinical Brain Research and in 2009 chairman of the German Center for Neurodegenerative Diseases in Tübingen.
His main areas of research are the genetic and molecular basis of Parkinson's disease, dystonia and other movement disorders, as well as their diagnosis and treatment.
Monique Giroux, MD (US) is the medical director of the Northwest Parkinson's Foundation where she has developed the Virtual Wellness Center www.nwpf.org/wellness , a unique an innovative program focused on self-care and personal healing for people living with Parkinson's disease. Dr. Giroux founded the Booth garnder Parkinson's Care Center, an interdisciplinary center in Seattle, WA. She also leads The National Parkinson's Foundation Care Center Consortium, designed to bring together national experts in the spirit of collaboration and innovation to meet the care needs of our community. Her focus is on issues related to wellness, comprehensive care, quality of life, and chronic disease management. She serves as medical faculty for the NPF Allied Team Training Program. Dr. Giroux is completing a 2 year fellowship in holistic medicine as a clinical fellow in Integrated Medicine at the University of Arizona. Dr. Giroux completed her medical residency at Yale followed by a two-year fellowship in Movement Disorders at Emory University in Atlanta, Georgia. She is board certified in Neurology. She is co-author with Sierra Farris, PA-C of Every Victory Counts. Essential information and inspiration for a lifetime of wellness with Parkinson's disease, http://www.everyvictorycounts.org/ .
Ruth Hagestuen, RN (US) Ruth Hagestuen’s work with Parkinson’s disease began in 1987 where she worked as nurse manager and program director of the Methodist Hospital Parkinson’s Center in Minneapolis, Minnesota. The Center, dedicated to delivery of comprehensive care ,relocated as a free-standing facility in 1995 and was renamed the Struthers Parkinson’s Center.
In July, 2000, Ruth joined the National Parkinson Foundation (NPF) staff as National Program Director and remained with the Foundation as Vice President and Director of Programs until July, 2009. Two signature programs initiated under her leadership are the Allied Team Training for Parkinson’s (ATTP) and the National Parkinson Care Network (NPCN). She continues as director of Allied Team Training for Parkinson and as consultant to the National Parkinson Foundation.
Beginning in August, 2009, Ruth joined the New York University Parkinson and Movement Disorders Center, a Center of Excellence of the National Parkinson Foundation, as Center Director where she served until February 2011. In this role she provided leadership in development of specialized programs designed to meet the comprehensive needs of persons with Parkinson’s and their care partners throughout the continuum of care.
Ruth has rejoined the Struthers Parkinson’s Center, also a National Parkinson Foundation Center of Excellence, where she is continuing to promote patient centered, Parkinson’s specialized care and wellness A primary focus of her effort is the development of a regional network designed to meet the needs of people with Parkinson’s and their family members throughout the continuum.
Etienne Hirsch, PhD (France) is a neurobiologist involved in research on Parkinson's disease and related disorders. He obtained his PhD in 1988 from the University of Paris VI (Pierre et Marie Curie). He is currently the associate director of CRICM and head of "Experimental therapeutics of Neurodegeneration” at the CRICM at Pitié-Salpêtrière hospital in Paris. His work is aimed at understanding the cause of neuronal degeneration in Parkinson's disease and is focused on the role of the glial cells, the inflammatory cytokines and apoptosis but also on the consequences of neuronal degeneration in the circuitries downstream to the lesions. He is member of several advisory boards including, French Society for Neuroscience (past-President), Scientific Advisory board at INSERM. He obtained several prizes including Tourette Syndrome Association Award in1986, Young researcher Award, European Society for Neurochemistry in 1990, Grand Prix de l'Académie de Sciences, Prix de la Fondation pour la recherche biomédicale « Prix François Lhermitte » in 1999, Chevalier de l'ordre des palmes académiques in 2009. He is author of more than 200 peer reviewed articles.
Robert Iansek, B.Med.Sci., MB.BS, PhD., FRACP (Australia) is Professor of Geriatric Neurology at Monash University in Melbourne, and Director of the Victorian Comprehensive Parkinson Program (VCPP) as well as Director of Clinical Research Centre for Movement Disorders & Gait at the Kingston Centre, Southern Health in Melbourne.
He is a Neurologist by training and has over 25 years neurophysiological research experience, having published over 150 articles, books, and videos. His main research interests' concern basal ganglia function and malfunction in Parkinson's disease, cortical gait control measures and rehabilitation in Parkinson's disease.
Professor Robert Iansek was instrumental in the development and use of multi disciplinary rehabilitation for people with Parkinson's disease and its implementation in both the public and private health systems in Australia.
Tom Isaacs (UK) was diagnosed with Parkinson's at the young age of 27 and since then has done everything he can to raise funds, heighten awareness and find a cure for the condition which is perceived by many as a condition affecting the elderly alone.
Having completed his highly successful 1,250-mile sponsored walk in 1999, Tom left his job as Director of a London property company in April 2002 to undertake his Coastin' challenge. By April 2003, Tom had walked 4,500 miles around the British coastline, climbed the highest mountains in England, Scotland and Wales and run the Flora London Marathon, raising over £350,000. In 2004 he was runner-up in the GMTV/Daily Mirror Fundraiser of the Year Award and in 2005 he was elected Charity Personality of the Year. A year later he co-founded The Cure Parkinson’s Trust, an organization of which he is President and which has since gone on to raise over £5.5 million and has been involved in funding and facilitating ground breaking research in Parkinson’s.
Tom was a Board Member of the European Parkinson’s Disease Association from 2005 until 2010. He also represents the interests of people with Parkinson’s on DeNDRoN (the Dementias and Neurodegenerative Diseases Research Network). Tom acted as the patient representative on the Steering Committee for the World Parkinson Congress 2010 organizational committee and continues in this role for the 2013 Congress. At the 2010 Congress he made nine presentations to a variety of audiences. He is also a leading contributor to the SENSE-PARK project, which is a European funded initiative to establish a more personalized, objective measuring device for people with Parkinson’s and those who treat them.
Tom has written a book "Shake Well Before Use” about his walk and his experiences with Parkinson’s, which he conveys with passion, optimism and humor. He speaks regularly about his condition and the ability of people with Parkinson’s to inject urgency into progressing the delivery of new therapies to the clinic.
Joseph Jankovic, MD (US) received his Medical Degree at the University of Arizona, Dr. Jankovic completed medicine internship at Baylor College of Medicine, Houston in 1974. He subsequently completed residency in Neurology at the Neurological Institute, Columbia University, New York City, where he was selected as the Chief Resident. While there he obtained additional training in movement disorders with Stanley Fahn, MD. In 1977 he joined the faculty of Baylor College of Medicine and established the Parkinson's Disease Center and Movement Disorders Clinic (PDCMDC). The PDCMDC has been recognized as a "Center of Excellence" by the National Parkinson Foundation and the Huntington Disease Society of America. Promoted to a full professor of Neurology in 1988, Dr. Jankovic holds the endowed Baylor College of Medicine Distinguished Chair in Movement Disorders.
Dr. Jankovic has published over 700 original articles and chapters and has edited or co-edited 35 books and volumes, including several standard textbooks such as "Neurology in Clinical Practice” (NICP.com) and "Parkinson's Disease and Movement Disorders” (along with a video atlas), both currently in 5 th edition. Dr. Jankovic, along with Dr. Fahn, co-authored a comprehensive book (and DVD) entitled "Principles and Practice of Movement Disorders”, published in 2007.
Ryuji Kaji, MD, PhD (Japan) is Professor and Chairman of the Department of Neurology at Tokushima University , Graduate School of Medicine, Tokushima, Japan . He has been a member of The Movement Disorder Society (MDS) since 199 1 and has served on the MDS Membership and Congress Scientific Program Committees, as well as on the Editorial Board of Movement Disorders journal.
Dr. Kaji received neurology and neurophysiology training at the University of Pennsylvania and completed a movement disorders training course at the Kyoto University Hospital. His research interests have been focused on the study of pathophysiology, molecular genetics, and functional neuroanatomy of dystonia, especially those of lubag dystonia .
Jeffrey Kordower, PhD (USA) is the Jean Schweppe-Armour Professor of Neurological Sciences, Professor of Neurosurgery, Director, Research Center for Brain Repair, and Section Head of Neuroscience at Rush University Medical Center. He received his B.A. and MA from the City University of New York and his Ph.D. in Neuropsychology from that same institution in 1984. He received an Honorary Doctor of Science from that same institution in 2004.
Dr. Kordower is an international authority in the area of movement disorders, with special expertise in experimental therapeutic strategies in Parkinson’s disease and a world-renowned translational neuroscientist in the area of neurodegenerative diseases. Based upon preclinical research in his laboratory, adrenal cell transplantation, adrenal cell-peripheral nerve co-grafts, fetal dopamine cell transplantation, as well as three gene therapy trials have all been translated from the laboratory to the clinic. He has published landmark papers in the area of cell replacement strategies including the first demonstration that fetal dopaminergic grafts can survive, innervate and form synapses in patients with Parkinson’s disease that was published in the New England Journal of Medicine. Furthermore, his recent demonstration that long-term grafts in such patients can form Lewy bodies was recently published in Nature Medicine. He has recently co-authored a paper in Nature making the first demonstration of human dopaminergic stem cell viability, maintenance, and function in parkinsonian mice, rats and monkeys. With regards to gene therapy, he published the lead article in Science demonstrating that gene delivery of the trophic factor GDNF can prevent the emergence of motor symptoms and prevents nigrostriatal degeneration in a nonhuman primate model of PD. A similar finding using gene delivery of neurturin has, in part, resulted in this therapy currently being tested in a Phase II clinical trial. He also was the first to demonstrate that gene delivery of trophic factors can obviate neurodegenerative processes in nonhuman primate models of Huntington’s disease and Alzheimer’s disease, with these studies being published in Nature and The Journal of Comparative Neurology, respectively.
Dr. Kordower has published over 300 papers, has lectured all over the world, has been on over 20 Journal Editorial boards (Sections Head and Associate Editor on two), and is on the Scientific Advisory Boards of many biotech companies and scientific organizations. He is a Past-Councilor and Past President of the American Society for Neural Therapy and Repair, Past-Chair for the Committee for the Use of Animals for the Society for Neuroscience, and is a founding Scientific Advisory Board member, and current Executive Committee member, for the Michael J. Fox Foundation.
Lucie Lachance, BSc(N), MSc (Canada) is a Clinical Nurse Specialist in Movement Disorders at the Montreal Neurological Hospital within McGill University Health Center in Quebec since 2001. With the McGill Disorders Program Team, she evaluated, delivered and coordinated appropriate care for patients with complex needs and provided support and educational assistance to their families over the continuum of care required by the progressing condition associated with the Parkinson Disease and other movement disorders. One of the leader of the Movement Disorders Program at the MUHC, her activities extend well outside the MUHC as she provide guidance and disseminate best practices to nurses, allied health care professionals and others clinical partners regarding issues related to care and interdisciplinary team effectiveness in the treatment of Parkinson. She is regularly call upon as a lecturer for the Mcgill University Neuro Nursing Program and as invited speaker and organizer at various community lectures and local conferences on Parkinson targeted to the patients, their family and the health care professional. In addition, she is actively promoting an educational networking model for nurses across Canada and the Provincial Parkinson Societies at national and international conferences on Movement Disorders.
She served the Parkinson Society of Canada as a board member from 2004- 2010 and was the Chair of support/services committee and board member for the Parkinson Society Quebec from 2002-2004.
Lucie graduated in Nursing from Université de Sherbrooke in 1993, where she also received a M.Sc. in Clinical Science in 1996.
Anne-Louise Lafontaine, MD (Canada) has an MD from McMaster University and MSc- biostatistics and epidemiology from McGill University. She completed her residency in neurology at McGill University and went on to do a fellowship in movement disorders at the University of Calgary, Alberta. She has a strong interest in education and ethics and is currently the program director for the neurology residency training at McGill University as well as the co-chair of the research ethics board of the Montreal Neurological Hospital. Dr. Lafontaine has been very involved in the Parkinson Society Canada as a member of the board, chair of the research policy committee and currently maintains her membership on the research policy committee. She is the Director of the McGill Movement Disorder clinic.
Anthony E. Lang, OC, MD, FRCPC, FAAN (Canada) is Professor and Director of the Division of Neurology at the University of Toronto, Director of the Movement Disorders Center at the Toronto Western Hospital, the Jack Clark Chair for Parkinson's Disease Research at the University of Toronto and Director of the Edmond J. Safra Program in Parkinson's Disease at the University Health Network and the University of Toronto. Dr. Lang trained in Internal Medicine and Neurology at the University of Toronto. He then undertook postgraduate training in Movement Disorders at Kings College Hospital and the Institute of Psychiatry in London, England under the late Professor David Marsden. Dr. Lang's research has included clinical studies of poorly recognized neurological disorders, clinical trials of new therapeutic modalities and collaborative basic and clinical studies involving molecular biology, neurophysiology, neuropsychology and imaging. He has published over 450 peer reviewed papers, many in important medical journals including the New England Journal of Medicine, Nature Medicine, the Lancet and Lancet Neurology, the Annals of Neurology, Brain, and Movement Disorders. Dr. Lang has served on the Movement Disorder Society (MDS) International Executive Committee and as Treasurer from 1988-1992 and Secretary from 1996-1998. He served as the MDS President from January 2007- June 2009 and is the current Past President. He served as CoEditor-in-Chief of the international journal Movement Disorders between 1996 and 2003 inclusive. He has given many named lectures, and won a number of awards for his research efforts. In 2010 he was appointed as an Officer in the Order of Canada, the centrepiece of Canada's honors system recognizing a lifetime of outstanding achievement, dedication to the community and service to the nation.
Irene Litvan (USA) is the Raymond Lee Lebby endowed Professor of Parkinson Disease Research, Professor of Neurology, Pharmacology, and Anatomy at the University of Louisville as well as the Director of the University of Louisville Division of Movement Disorders and National Parkinson Foundation Center of Excellence at the Frazier Rehab Neuroscience Institute. Dr. Litvan has published more than 200 peer-reviewed articles and chapters on the diagnosis of neurodegenerative parkinsonian and dementia disorders and its neuropsychiatric aspects. She was senior editor of the first book on progressive supranuclear palsy (PSP) (Oxford University Press), senior editor of the first book on corticobasal degeneration (CBD) (Lippincott-Press), editor of a book on atypical parkinsonian disorders (Humana Press) and on dementia (Elsevier). She has been Co-Editor of Moving Along , the newsletter of the Movement Disorder Society for 8 years and is an ad-hoc reviewer for several medical, neurologic and neuropsychologic journals. She is a section reviewer at the National Institutes of Health, and is CEO and Founder of the Litvan Neurological Research Foundation (501(c)3), whose mission is to increase awareness, determine the cause/s and search for a cure for neurodegenerative disorders presenting with either parkinsonian or dementia symptoms .
Dr. Litvan is a member of the American Neurological Association and a fellow of the American Academy of Neurology. She serves and has served on many boards and committees. She is currently member of International Executive Committee of the Movement Disorders Society, secretary of the World Federation of Neurology (WFN) Research Group on Dementia and member of the educational committee of the WFN Research Group on Movement Disorders, scientific liaison of the American Academy of Neurology Movement Disorder Executive Committees and member of the medical scientific boards of CurePSP, PSP Europe Association and the Association for Frontotemporal Dementias.
She received the NIH merit award for leading international multicenter studies to evaluate and improve the clinical diagnostic criteria of several dementia and parkinsonian neurodegenerative disorders. She is the principal investigator of the "Genetic and Environmental Risk Factors for PSP,” a multisite and multidisciplinary study to identify the cause or causes of this disorder and is conducting a number of clinical trials to identify symptomatic and biologic therapies to slow the course of neurodegenerative diseases; and partnering with local organizations to determine barriers to the access of healthcare and research faced by residents of medically underserved areas of Louisville and rural Kentucky and to increase this population's access to healthcare, She is actively involved with University of Louisville neuroscientists in determining the neurotoxicity of plants derived compounds. She mentors master, PhD candidates, medical students, residents and fellows. The scope of her research is translational in its nature.
Margarita Makoutonina, MDP , B. Health Sci., OT (Australia) and her daughter migrated to Australia in 1992. With no English but with back ground in teaching Margarita obtained a new qualification in OT and a specialization in Movement Disorders. Margarita has over 14 years of clinical and research experience in leading an innovative, evidence based and collaborative multidisciplinary team (MDT). Ms. Makoutonina has been lecturer at the RMIT University and Mayfield Education Institute for 9 years.
Margarita’s achievements include presenting research papers, serving as a faculty member at numerous national and international Congresses, developing and conducting professional specialist training in Parkinson’s nationally and internationally, having several publications in the field of Parkinson’s disease.Margarita has been in a Leadership Health Professionals Group, Movement Disorders Society since 2009. She has been actively involved in the "Health Professionals, Movement Disorder Society” website development.Svetlana, Margarita’s daughter, through her project as a part of MBA assisted her mother in establishing a company ParkiLife Australia Pty Ltd which is specialized in Movement Disorders and management of people with Parkinson’s disease (PD) as well as, providing educational initiatives for Health Professionals, People with Parkinson’s (PwP) and their carers nationally and internationally. As an expert in the field, Margarita assists in establishing specialized multidisciplinary movement disorders programs with evidence based rehabilitation comprehensive approach nationally and internationally.
Ms. Makoutonina has a passion in research, education, and training for health professionals. She has been following her dream in developing certified specialized training as part of undergraduate, postgraduate or short course in Parkinson Disease, establishing educational and training foundation for development of multidisciplinary program in treating Parkinson’s disease.
Laura Marsh, MD (US) is the Executive Director of the Mental Health Care Line at the Michael E. DeBakey VA Medical Center in Houston, Texas and a Professor in the Departments of Psychiatry and Neurology at Baylor College of Medicine in Houston, Texas. Dr. Marsh completed a residency in psychiatry at Johns Hopkins University School of Medicine and research fellowships in brain neuroimaging and neuropsychiatric disorders at the National Institute of Mental Health and at Stanford University School of Medicine. She was a member of the Stanford faculty from 1994 to 1998. From 1998 to 2009, she was a faculty member at Johns Hopkins, where she was an Attending Psychiatrist in the Geriatric Psychiatry and Neuropsychiatry Division and Director and Principal Investigator of the Clinical Research Program of the Morris K. Udall Parkinson's Disease Research Center of Excellence. Dr Marsh's clinical and academic research interests focus on neuropsychiatry and she has specific expertise in the psychiatric aspects of Parkinson's disease. Her research investigates methods to improve the characterization, detection, and treatment of Parkinson's disease—related psychiatric and cognitive disturbances. Dr. Marsh serves on the Scientific Advisory Boards of the American Parkinson's Disease Association and the National Parkinson Foundation. She is an active member of the Parkinson Study Group serving on the Scientific Review Committee, Symposia Committee, and a Co-Chair of the Cognitive/Psychiatric Working Group.
Linda M. Morgan, MBA, RPh (US) is a registered pharmacist currently working at the Fullerton Genetics Center in Asheville, NC. Currently managing a birth defects prevention program which she developed and implemented, she has spoken nationally as well as internationally on various preconception health care topics. Linda graduated with a BS in Pharmacy from UNC-Chapel Hill and later earned an MBA.
Diagnosed with Parkinson's disease in 2005, she attended the Parkinson's Disease Foundation's inaugural Clinical Research Learning Institute (CRLI) in 2008. As a clinical trial advocate Linda has spoken on the subject at regional and national as well as local Parkinson's disease venues. On the same subject, Linda has been quoted in Time Magazine and the Wall Street Journal.
In addition to speaking at conferences, Linda has helped with the planning and implementation of several PD conferences including the Davis Phinney Foundation's Victory Summit in Charlotte NC, the Parkinson's Disease Foundation's (PDF ) Clinical Trial Recognition and Awareness Day in Raleigh, NC and PDF's 2009 and 2010 CRLI's as well as the upcoming 2011 Southeastern Parkinson's Disease Conference to be held in Atlanta. In 2010 Linda attended the WPC in Glasgow and is honored and thrilled to be serving on the 2013 WPC Program Committee.
Marten Munneke, PT, PhD
Michel Panisset, MD (Canada) is Assistant Professor at McGill Centre for Studies in Aging, Department of Neurology and Neurosurgery. He is also co-chairing the WPC 2013 Local Organizing Committee with Dr. Anne Louise Lafontaine.
Werner Poewe, MD (Austria) is a Professor of Neurology and the Director of the Department of Neurology at Innsbruck Medical University in Innsbruck, Austria. He held a Residency in Clinical Neurology and Psychiatry at the University of Innsbruck, Austria, from 1977 to 1984. Then, Professor Poewe was a British Council Research Fellow at University College and Middlesex Hospital Medical School, London. For three years (1986-1989), he was a Senior Lecturer in the Department of Neurology at the University of Innsbruck, Austria. From 1990 through 1994 he served as Professor of Neurology and Acting Director of the Department of Neurology at the Virchow Hospital of the Free University of Berlin. Professor Poewe's main research interests are in the field of movement disorders with particular emphasis on the clinical pharmacology of Parkinson's disease and dystonia. He has authored and co-authored more than 400 original articles and reviews in the field of movement disorders. He served as President of the International Movement Disorder Society from 2000 through 2002, as President of the Austrian Society of Neurology from 2002 to 2004 and is the current President of the Austrian Parkinson's Disease Society.
Sara Riggare (Sweden) was in her early teens in the mid 1980’s when she realized that her body did not always function as others’. She was diagnosed with PD in 2003, at the age of 32 and is living in Stockholm with her husband and daughter. She has been working as a chemical engineer with environmental issues for 14 years but is now a health informatician, using ICT to improve healthcare and medical research. Sara is involved with PD issues both in Sweden and internationally and wants to increase awareness about young-onset PD and is dedicated to patient education and bringing PWP and their families closer to healthcare professionals and researchers.
Beth-Anne Sieber, PhD (US) joined the NINDS in 2007 as a Program Director in the Neurodegeneration Group. She received her bachelor's degree in biology and psychology from Rutgers University, after which she received a Ph.D. in Physiology and Neurobiology from a joint program between Rutgers and the University of Medicine and Dentistry of New Jersey. Her graduate studies focused on animal and cell culture models of dopamine neuron development and neurotoxicity, with emphasis on utilizing neuropharmacological and neurochemical approaches to determine the roles of neuronal-glial interactions and neurotrophic factors in these processes. She then pursued postdoctoral studies at the Karolinska Institute in Stockholm, Sweden. While there, she expanded her interest in dopamine neurobiology by utilizing molecular approaches to elucidate the role of neurotrophic factors and receptor tyrosine kinases in cellular and behavioral function in mouse models. Prior to joining the NINDS, Dr. Sieber spent over seven years as a Program Director at the NIMH, where she managed a grant portfolio in developmental neurobiology and co-chaired related efforts for the NIH Neuroscience Blueprint. Her current duties at the NINDS include management of a grants portfolio on Parkinson's disease, which includes neurobiological approaches to understand neuronal loss and alterations in circuitry, as well as grants in the areas of gene therapy, deep brain stimulation, and non-motor aspects of the disease. Dr. Sieber also manages the Udall Centers of Excellence for Parkinson's Disease Research program. She serves as Chair of the Parkinson's Disease Working Group, which coordinates and facilitates research programs and other activities related to Parkinson's disease within the NINDS.
Barbara Snelgrove (Canada) joined Parkinson Society Canada in November 2005. As Director of Education and Support Services she works collaboratively with her education colleagues across Canada to develop national resources and programs for people living with Parkinson's. She also manages the National Information and Referral Centre. She is a member of the National Advocacy Committee and represents the Society on various working groups such as the Canadian Coalition for Genetic Fairness; CIHR Institute of Genetics Working Group; Neurological Health Charities Canada; and Parkinson Research Alliance, whose members are developing the first-ever Canadian Clinical Guidelines on Parkinson's disease. Prior to joining Parkinson Society, Barbara gained knowledge and experience in program delivery with the Alzheimer Society as regional Executive Director in Owen Sound, Provincial Education Coordinator at Alzheimer Society Ontario, and Manager of Support Services at the national Alzheimer office. Over the span of her career, Barbara has been a guest speaker at many conferences both nationally and internationally in the areas of caregiver support and dementia. In 2010, she co-presented a poster presentation at the World Parkinson Congress. She has done extensive research on various topics relating to clinical information and has been a contributing writer on numerous materials for the general public in the areas of research, care management, drug trials and treatments. She is a past-instructor with George Brown College in the dementia care program in Toronto.
Barbara has a B.A. from York University; and part-time studies in the M.A. program at OISE (U of T).
Maria Grazia Spillantini, PhD (UK) is Professor of Molecular Neurology at the Clinical School of the University of Cambridge, UK. She was born in Arezzo, Italy. After receiving a Laurea in Biological Sciences, summa cum Laude, in 1981 from the University of Florence, Italy, she pursued research at the Department of Clinical Pharmacology of the University of Florence, at the Unité de Neurobiologie of the INSERM in Paris and at the Molecular Neurobiology Unit of the Medical Research Council in Cambridge. In 1987 she moved to the Medical Research Council Laboratory of Molecular Biology, where first, working in Dr Michel Goedert's group, she obtained a Ph.D. in Molecular Biology from Cambridge University (Peterhouse) and later she worked as postdoctoral fellow with Prof. Sir Aaron Klug. In 1996 she moved to the Brain Repair Centre of the University of Cambridge at the Department of Clinical Neurosciences where she is at present. Her group works on the molecular neuropathology of diseases characterized by tau and alpha-synuclein aggregates. She identified alpha-synuclein as the major component of the Lewy bodies in Parkinson's disease and dementia with Lewy bodies and described one of the first mutations in the Tau gene leading to Frontotemporal dementia and Parkinsonism linked to chromosome 17. She is Fellow of the Academy of Medical Sciences, London; and official fellow of Clare Hall and life member of Peterhouse, Cambridge.
Jon Stamford, MD (UK) is a neuroscientist with a double interest in Parkinson's. As well as leading a research laboratory investigating the neurochemistry of Parkinson's for more than a decade, Dr. Stamford also has young onset Parkinson's disease. He has published three neuroscience books and more than 200 research publications (reviews, papers, abstracts) in an academic career lasting 23 years. He holds an honorary readership at the University of Leicester, and is a scientific consultant and member of the patient advocates group with the Cure Parkinson's Trust. Jon also writes a humorous and influential weekly blog "Slice of Life" about life with young onset Parkinson's.
Louis Tan Chew Seng, MBBS, MRCP (UK), FAMS (Neurology), FRCP (Edin) (Singapore) is a Senior Consultant Neurologist with the National Neuroscience Institute, Singapore (TTSH campus) and also the Co-Director of the Parkinson's Disease and Movement Disorders Centre there. In 2006, the Centre received the distinction of being an International Centre of Excellence for the United States based National Parkinson Foundation (NPF) for Parkinson-related research, comprehensive care and community outreach. He is an Adjunct Associate Professor of Duke-NUS Graduate Medical School, Singapore.
He was a founding member and the past-secretary of the Asian and Oceanian Section of the Movement Disorder Society. He is currently the Co-Chair of the AOS Education Committee, and also a member of the Movement Disorders Journal's editorial board.
Upon graduating from the National University of Singapore and completing his neurology training at Tan Tock Seng Hospital, he underwent a movement disorders fellowship at the Parkinson's Institute in Sunnyvale, California.
His areas of specialty and research interests are Parkinson's disease and movement disorders. He is also interested in the interested in the epidemiology, clinical studies and clinical trials in Parkinson's disease and other movement disorders.
Dr Tan was first involved as a member of the Executive Committee of the Parkinson's Disease Society (Singapore) in 1997. Upon return from his overseas medical training, he has continued to serve on the committee since 2001 and is currently the Secretary of the Society.
Alice Templin, BSc, PT (Canada) It was about 10 years ago that I was diagnosed with Parkinson's disease. I'd call it "middle-onset" as I was 50 years old at the time. I was just transitioning into a new career, teaching English as a Second Language, so I had to take stock again. Having worked as a physiotherapist for many years, mostly in the area of neuro rehab, I was familiar with PD on a professional level. The journey of living with Parkinson's now became a personal one - for myself, my husband and my son.
Although I have been fortunate in that the progression has been slow, the decision to keep my professional life mostly at the volunteer level has been a good one for me. I regularly volunteer, and occasionally supply, in an ESL classroom where the multicultural and multi-linguistic environment is stimulating, challenging, and rewarding.
While I feel that Parkinson's does not define who I am, it has definitely provided the context for many of my activities. I have been a Support Group member (we call ourselves the Young and Active group) for many years now. Also, over the past several years, I have been an active volunteer at Parkinson Society Ottawa, as a member of both the Program Committee and the Planning Committee for PSO's annual Perspectives on Parkinson's Symposium. In addition, I have been the lead volunteer in managing the Resource Centre/Library in the PSO office. I have enjoyed perusing research briefs, articles and biographies for the Symposium and reading book synopses for the library, all of which help to keep me aware of what is happening in the world of Parkinson's and keep me hopeful for the future.
A personal highlight for me last year was to walk the 800-kilometer (500-mile) Camino de Santiago with a friend. It was both gratifying and humbling to be able to meet the physical challenge of walking for 40 days along this ancient pilgrimage route in Northern Spain and to raise over $13,000.00 for PSO.
Over the past 10 years so many doors have opened, providing opportunities and challenges encouraging me to do things I never thought I could. So much can be done when we do it in partnership and hope.
Eduardo Tolosa, MD (Spain) degree from the University of Barcelona. He obtained his neurological training at the University of Minnesota Hospital in Minneapolis. He was Visiting Scientist at Brookhaven National Hospital where he worked with George Cotzias during 1974 and 1975, and subsequently he joined the faculty of the Department of Neurology at the University of Minnesota. He was later appointed Chief of Neurology at the University Hospital in Barcelona in 1982. He is Professor of Neurology at the University of Barcelona and the Director of the Parkinson Disease and Movement Disorder Centre at the University of Barcelona Hospital.
Prof. Tolosa was certified as a neurologist by the American Board of Neurology and Psychiatry in 1976. He became a Fellow of the in 1997. He is a Fellow of the American Academy of Neurology and the American Neurological Association and of the Royal College of Physicians and founding member of the Movement Disorder Society (MDS) . He has been President of this Society and President of the European Neurological Society. Prof. Tolosa is an honorary member of several neurological societies including the British Neurological Association and the French Neurological Society.
Prof. Tolosa's research and publication activities have brought him appointments to various peer-review journals. He is, for example, a member of the International Advisory Committee of the Archives of Neurology and has served as member of the editorial board of the European Journal of Neurology, Movement Disorders, Practical Neurology, the Journal of Neurology Neurosurgery and Psychiatry and the Journal of Neurology.
Professor Tolosa research interest have centered on movement disorders and particularly in issues related to experimental therapeutics, etiology and pathophysiology of various Parkinson syndromes. His team has investigated on the clinical and molecular genetics of Parkinson disease and progressive supranuclear palsy. They demonstrated that an extended tau gene haplotype (H1E) in its homozygous state is overrepresented in PSP and described the only homozygous tau mutation so far in patients with PSP syndrome. He has also investigated in collaboration with neurophysiologist in his department brainstem mechanisms underlying several movement disorders such as dystonia and the various Parkinson syndromes defining the presence of brainstem abnormalities in various focal dystonias and atypical parkinsonisms.
In the areas of experimental therapeutics Professor Tolosa was involved in pioneer studies defining mechanisms underlying levodopa related motor fluctuations, both, in patients and in animal models of parkinsonism and his team has been among the first in Europe to evaluate efficacy of novel surgical strategies for Parkinson disease such as subthalamic nucleus stimulation and its impact upon patients cognition and quality of life.
Miquel Vila, MD, PhD (Spain)