People with MS and leading experts from around the world took part in a series of scientific debates and educational presentations on MS management, treatment and research.

Welcome and Introduction

Daniel Larouche has been volunteering for the MS Society of Canada for over 15 years. He participated in the first ever Quebec Division MS Bike Tour in 1990 and has sponsored the event for a number of years. In 1992, he was appointed Vice-Chair of the Division’s Board; he then held the post of Chair until 2003.

In 1996, as a senior partner in one of Montreal’s large PR firms, he helped to manage the campaign to get interferon on to the list of medicines covered by the region’s medical insurance plan. He was also a member of the founding committee for the Division’s successful Opal Evening event.

Since 2004, Daniel has been a member of the Society’s National Board of Directors’ Executive Committee and played a key role in the Society’s recent restructuring. In the autumn of 2007 he took on the role of Chair of the National Board of Directors.

Welcome and Introduction

Professor Alan Thompson, Director of the Institute of Neurology, University College London, is head of the Neurorehabilitation research area in the Institute’s Department of Brain Repair & Rehabilitation, Deputy Director of the UCL/UCLH Comprehensive Biomedical Research Centre, and is a consultant neurologist at the National Hospital for Neurology & Neurosurgery. He is the Chairman of MSIF’s International Medical and Scientific Board and Editor-in-Chief of the journal Multiple Sclerosis. His research interests include the investigation of mechanisms that underlie disability in neurological conditions, particularly multiple sclerosis, the development of outcome measures which assess the impact of such conditions and the improvement of symptomatic management and service delivery in MS. He has published extensively in each of these areas.

Welcome and Introduction

Allen is a retired banker and has held many financial and management positions in his career.

He is currently Chairman of the MS Society of Ireland and one of its three Honorary Lifetime Members. He is on the MSIF Board, Chairman of MSIF’s PwMSIC and past treasurer of the EMSP.

Allen is a National Board Member of the following organisations; the Disabled Drivers Association and the Citizens Information Phone Service. Allen has been a disability activist since his involvement as a founding member of the ‘Commission on the Status of People with Disabilities’ for the Irish Government.

Married to June with two grown-up children; he was diagnosed with MS in 1984.

Session 1: The Genesis of MS

My name is Vicky. When I was 15 years old, my life took a surprising turn. Everything started a few weeks before I was diagnosed with multiple sclerosis. I suddenly began to feel some symptoms of the disease that I did not know I had. I had pins and needles in my legs. In only a few hours, my whole body was numb. Then, writing and even taking a short walk became difficult for me. After seeing several doctors and taking various tests, on June 28, 2005, a neurologist told me that I had MS. At that time I did not realize the consequences of my diagnosis and the changes that would affect my life in the future. However, I quickly understood what I could expect from my new reality and pace of life. Despite all the efforts I make, I continue to experience symptoms like fatigue and speech problems. Fortunately, my body is sometimes able to overcome the symptoms.

I am still positive about my situation and hope for a cure. The disease has made me realize that I have strength and perseverance that I didn’t know I had, which helps me get through rough patches.

Session 1: The Genesis of MS - Presentation

Professor Tardieu is Professor of Paediatrics and Head of Paediatric Neurology Unit, Le Kremlin Bicêtre, Paris, France. He completed his graduate and undergraduate training at the Université de Paris, France, the Université Catholique de Louvain, Belgium and at Harvard Medical School. His particular fields of clinical and research interest are: paediatric neurology, infectious and immunological diseases of the brain, HIV-1 infection, MS in children and herpes encephalitis. Professor Tardieu is a Board member of the European Paediatric Neurology Society which is dedicated to promoting clinical care and scientific research in the field of paediatric neurology.

Session 1: The Genesis of MS - Presentation

Dr Banwell graduated with a degree in Medicine from the University of Western Ontario in 1991. She pursued a residency in paediatrics at the Children’s Hospital of Western Ontario, University of Western Ontario, from 1991-1994, and a Paediatric Neurology residency at The Hospital For Sick Children, University of Toronto from 1994-1997. Dr Banwell successfully completed the American Board Certification in Pediatrics, the Canadian Fellowship Examination in Paediatrics in 1994 and the Canadian Neurology Fellowship Examinations in 1997. After completing training in Paediatrics and Neurology, Dr Banwell spent two years completing a Neuromuscular Disease Fellowship at the Mayo Clinic, Rochester, Minnesota.

Dr Banwell is the Director of the Paediatric Multiple Sclerosis Clinic, a multidisciplinary clinic dedicated to children with multiple sclerosis and other acquired demyelinating diseases. Dr Banwell also runs a weekly paediatric neuromuscular disorders clinic.

Session 2: The Early Treatment Debate

Martin Laperle, a training representative, was diagnosed with MS in September 2004 at the age of 38. Significant problems with his vision forced him to leave his job in sales. In January 2005 he enrolled on a nine-month course for people with disabilities and then spent seven weeks on an Internship with the Quebec Division of the MS Society of Canada, where he has been working ever since. His work mainly focuses on advocacy, meeting members of parliament and making them aware of the the needs of people with MS, particularly their housing needs. He is very interested in the issue of universal access to healthcare and adapted transportation. Martin is very optimistic about the future. In fact, his motto is ‘the best is yet to come!’

Session 2: The Early Treatment Debate - Presentation

Dr Ziemssen is a neuroimmunologist and head of the MS Center at the Neurological University Clinic in Dresden, Germany. He has published numerous papers on the neuroimmunology of MS.

Session 2: The Early Treatment Debate - Presentation

François Grand’Maison studied neurophysiology at McGill University. He then completed medical school at the Faculté de médicine de l’Université de Sherbrooke in 1983, his residency in Neurology in Sherbrooke in 1988 and his post-doctoral studies at the University of Western Ontario in 1990.

Dr Grand’Maison is chief of Neurology at Charles-LeMoyne Hospital, Montreal and past-president of the Canadian society of clinical neurophysiologists. He is the founder and director of the Neuro Rive-Sud Multiple Sclerosis Clinic. In addition to clinical work, he is involved in clinical trials in the field of MS.

Session 3: Cognition and Emotions in MS

Daniel Brunier was born in January 1952.

He obtained his degree in Engineering at the Ecole Centrale des Arts et Manufactures in Paris. He has worked in France, in a number of divisions of Electricité de France, Saudi Arabia and Scandinavia.

Through a variety of roles he has gained expertise in economic planning, international development and human resources management. He is currently an independent consultant in human resources.

Daniel was diagnosed with MS in 1998 and has been involved with the Ligue Française contre la Sclérose en Plaques for five years. From 2003- 2005 he was CEO and today continues as a volunteer focusing on creating and establishing international contacts and the Ligue’s MS and Employment project. He currently represents France on MSIF’s Persons with MS International Committee (PwMSIC).

Daniel is married and lives in Paris.

Session 3: Cognition and Emotions in MS - Presentation

Dr Ralph Benedict is a professor of neurology at the SUNY Buffalo Medical School and is a staff neuropsychologist at the Jacobs Neurological Institute. He has contributed a large number of publications on MS relevant topics involving neuropsychology, brain imaging and cognitive assessment.

Session 3: Cognition and Emotions in MS - Presentation

Dr Feinstein received his medical degree in South Africa. Thereafter he completed his training in Psychiatry at the Royal Free Hospital in London, England. He then trained as a neuropsychiatrist at the Institute of Neurology, Queen Square in London. His Master of Philosophy and PhD Degree were obtained through the University of London, England. He is currently a Professor of Psychiatry at the University of Toronto.

His neuropsychiatry research focuses on the search for cerebral correlates of behavioural disorders associated with multiple sclerosis, traumatic brain injury, and hysteria (conversion disorders).

In 2000-2001 he was awarded a Guggenheim Fellowship to study mental health issues in post-apartheid Namibia. This led to the development of Namibia’s first rating scale for mental illness. He is currently engaged on a similar project in Botswana.

Dr Feinstein is the author of The Clinical Neuropsychiatry of Multiple Sclerosis (Cambridge University Press, 1999)

Session 4: The Future - Experimental Therapeutics

I was a hairdresser by trade but, following the birth of my son in 1995, I was shocked to learn that I had MS. Far from blaming the illness, I am thankful for the opportunity I was given to clean up my life and my head. I returned to school to study for a new career and, for the past five years, have been working as an administrative assistant. I give many lectures at universities and workplaces and still continue to do volunteer work for the MS Society of Canada.

My life is a constant struggle. However, I can now say that I am very happy thanks to the courage given to me by my children.

Session 4: The Future - Experimental Therapeutics - Presentation

Dr Amit Bar-Or is an MS neurologist and neuroimmunologist at the Montreal Neurological Institute, Canada. His laboratory research is directed to understanding the basic principles of immune regulation including B cell, T cell and APC interaction, as well as principles of immune-neural interactions, in the context of CNS inflammatory disease.

He has established a program in 'Experimental Therapeutics', which develops and applies novel biological assays into well-designed clinical trials of MS. Of particular interest are studies of immune cell modulation and their contribution to central nervous system inflammation, studies of the immature immune system (paediatric MS, stem cell reconstitution), and studies of immune-neural interaction.

Dr Bar-Or completed his medical degree cum laude at McGill University in Montreal and pursued a Neurology Residency and Neuroimmunology Fellowship training at Harvard University, where he also completed an MSc program in ‘Translational Medicine’. He is currently an Assistant Professor in Neurology and Neurosurgery and an Associate Professor in Microbiology and Immunology at McGill University. He is holder of a McGill William Dawson Scholar Chair, and is a recipient of the FRSQ 'Chercheur Boursier Clinicien' Award and the prestigious MS Society of Canada (MSSC) Don Paty ‘Career Scientist’ Award.

Session 5: Care for the Caregiver

Elisabeth was the manager for the Norwegian Catholic Study and Conference Centre in the Oslo diocese when her husband John was diagnosed with MS in 1987. John continued as a senior executive in Volvo at a national and international level until 1997. By 1992 rapid deterioration had led him to permanently require a wheelchair. That same year, to allow him to continue his many MS-led activities and commitments, Elisabeth gave up her career to become John’s personal assistant and caregiver.

Not only has Elisabeth enabled John to participate as an MSIF Board member, past Chairman of MSIF’s PwMSIC and current Vice President of the European MS Platform (EMSP), but she continues to be active in her own right. She has been a peer and contact point for MS caregivers in her local branch for many years and is also its Vice Chair. She has, for many years, led the finance committee of her branch and has been the main fundraiser. At a national level she is a volunteer on the telephone helpline.

For the past seven years Elisabeth and John have made many presentations on MS at the local, national and international level. This has included presentations and lectures for newly diagnosed people with MS and their partners at the regional hospital and at the national MS rehabilitation centre.

Elisabeth’s devotion to helping improve the quality of life for people affected by MS led to her winning the 2008 MSIF Evelyn Nicholson Award for International Caregiver. Her award monies enabled two people from her local MS branch to take a short holiday.

Session 5: Care for the Caregiver - Presentation

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Rosalind Kalb PhD is Director of the Professional Resource Center at the National Multiple Sclerosis Society (NMSS) in New York City, developing and providing educational materials and consultation services for healthcare professionals. After receiving her doctorate from Fordham University in 1977, she began her career in MS, providing individual, group, and family therapy at the MS Care Center at the Albert Einstein College of Medicine. Following relocation to New York Medical College, Dr Kalb added a variety of other clinical and research activities to her work in MS, including groups for spouses and couples living with MS and neuropsychological evaluation and cognitive rehabilitation for research and treatment purposes. As a clinical psychologist in private practice, Dr Kalb has provided individual, group, and family therapy for people living with MS for more than 25 years.

Dr Kalb has authored and edited a number of publications about MS. She is the author of Families Affected by Multiple Sclerosis: Disease Impacts and Coping Strategie, a monograph published in 1995 by the NMSS and of the Society’s Knowledge is Power series for individuals newly diagnosed with MS. She is also the editor of the Society’s booklet series for health professionals entitled Talking with Your MS Patients about Difficult Topics, and serves on the editorial board of Keep S’myelin, the newsletter for children who have a parent with MS. Dr Kalb has edited two books – Multiple Sclerosis: The Questions You Have, The Answers You Need, published in its third edition in 2004, and Multiple Sclerosis: A Guide for Families, published in its third edition in 2005.

Session 5: Care for the Caregiver

Diane Vendette Adam obtained a Diploma of College Studies in special education technology. For a number of years she worked with young people with learning difficulties as a special education teacher at Accueil Boyer and the Centre Marie-Vincent. In 1992 she joined the Multiple Sclerosis Society of Canada’s Quebec Division and she has held the position of Services Coordinator for close to eight years. Her tasks include providing clients with psychological support; counselling; telephone support and advocacy services; making referrals and facilitating self-help groups and workshops at the Espoir Famille Conference. She writes a regular column for caregivers in MS Quebec, the Quebec Division’s quarterly magazine.

Closing remarks

Yves Savoie joined the MS Society of Canada in February 2007 as President and Chief Executive and as President of the Ontario Division. He also serves as a Director (ex officio) of the MS Scientific Research Foundation.

He exercises overall responsibility for the Society’s financial well-being, its revenue growth and for the quality of its client services and research programmes. He is an ambassador for the Society throughout Canada and abroad and is its key spokesperson to donors, governments, health professionals, the media and members of the MS research and scientific community.

Prior to joining the MS Society, Mr Savoie was Executive Director of the Family Service Association of Toronto. From 1998-2003 he served as the National Executive Director of Muscular Dystrophy Canada, where he was a passionate advocate for the inclusion of people with disabilities in our community. Previously, he served as the President of the Toronto East General Hospital Foundation and was the first Executive Director of the Royal Ontario Museum Foundation.

Mr Savoie is an MSIF Board Member and also a member of the Board of the Canadian Human Resources Council for the Voluntary/Non-profit Sector. He holds a Masters of Management from McGill University and an MBA from Concordia University. He received his Bachelor of Arts in International Relations from the University of Toronto and attended the Lester B. Pearson College of the Pacific as a scholar from his native province of New Brunswick.