md2015 speaker & chair bio’s MD2015 Symposium 23-24 April 2015 MUSCULAR DYSTROPHY WESTERN AUSTRALIA key note speaker Dr Michel Toussaint Rehabilitation Hospital Inkendaal Michel Toussaint, PhD. is a physiotherapist affiliated with the Rehabilitation Hospital Inkendaal, near Brussels in Belgium; where he manages the Centre for Home Mechanical Ventilation. For over twenty years, he has been a member of a multidisciplinary team led by Dr. Soudon, who have internationally recognised experience in the multidisciplinary treatment of patients affected by various neuromuscular diseases – Duchenne muscular dystrophy in particular. In 2008, Michel Toussaint obtained his PhD degree at the Faculty of Medicine, Catholic University of Leuven. His thesis focused on Daytime Ventilation in Duchenne patients. This research represented the largest body of evidence worldwide concerning Duchenne patients using Mouthpiece (Sip) Ventilation during the daytime. Dr. Toussaint has published over ten papers as first author. Michel’s ambition is to develop evidence-based knowledge about the care of Neuromuscular patients that may immediately be useful in practice. This includes the following fields: nocturnal and full-time ventilation, invasive and non-invasive techniques of ventilation, manual and instrumental techniques of airway clearance, swallowing and emergency care, education of patients, families and caregivers on respiratory techniques, and maintenance and hygiene of respiratory material. speakers Winthrop Prof Nigel Laing Laboratory Head, Neurogenetic Disease, Harry Perkins Institute of Medical Research In his PhD (1976-1979) and early postdoctoral studies (up to 1987) Prof Laing was a neuroembryologist researching factors controlling motor neuron death and muscle fibre type. In 1987-1988 he retrained in human molecular genetics at Duke University, North Carolina. Returning to Western Australia, he developed research and diagnostic molecular neurogenetics laboratories at the University of Western Australia and Western Australian, Department of Health respectively. His research laboratory has identified >20 human disease genes including mutations in skeletal muscle actin as a significant cause of congenital myopathies and slow skeletal/beta cardiac myosin as the cause of “Laing” distal myopathy. His laboratory has shown cardiac actin can replace skeletal muscle actin in skeletal muscle and is therefore a target for therapy for the skeletal muscle actin diseases. Prof Laing is Scientific Director of the Department of Health Neurogenetics Unit, which is a referral centre for diagnosis of neurogenetic disorders for Australasia. In the last two years, the Neuroegenetics unit has pioneered the use of next generation sequencing diagnostics for neurogenetic diseases in Australia. His research interests are disease gene discovery, development of therapies and prevention of genetic disorders through newborn screening and preconception carrier screening. Proudly brought to you by Clinical Professor Jack Goldblatt Director, Genetic Services & Familial Cancer Program of WA Clinical Professor Jack Goldblatt AM, MB ChB, MD, FCP, FRACP (Clin. Geneticist, HGSA) is the Director of Genetic Services and the Familial Cancer Programme of Western Australia, Director of Genetic Services at Princess Margaret Hospital for Children and King Edward Memorial Hospital for Women in Perth. He has been president of the Human Genetics Society of Australasia and a foundation board member of the International Federation of Human Genetics Societies. He has co-authored 238 papers in international, peer reviewed, journals. He spent two years as a visiting instructor in the medical genetics unit at Mount Sinai Hospital in New York, U.S.A. Prof. Goldblatt is a specialist physician and medical geneticist who has worked in the academic field of human genetics since 1975 with research based publications on aspects of clinical, biochemical and molecular genetics. Professor Matthew Bellgard Centre for Comparative Genomics, Murdoch University Professor Matthew Bellgard is a computer scientist by background with a PhD from the University of Western Australia in the field of artificial intelligence. Professor Bellgard is the inaugural Director of the Centre for Comparative Genomics (CCG) based at Murdoch University. The CCG undertakes research in the biomedical, biological and agricultural sciences on themes as diverse as human health, personalised medicine, food security, environmental management, animal and plant genomics and pathogens and viruses. The key to the CCG’s ability to operate at the boundaries between these diverse fields lies in its unique mix of capabilities and expertise in the enabling disciplines of bioinformatics, genomics, software development, and super and cloud computing. Professor Bellgard has a particular interest in rare diseases and is co-leader of the Australian consortium in the FP7 €12 million RD Connect program that focuses on providing an integrated platform connecting registries, biobanks and clinical bioinformatics for rare disease research. Dr Andrew Kornberg Director of Neurology, Royal Children’s Hospital Melbourne A/Prof Andrew Kornberg is a paediatric neurologist with broad clinical and research experience. He completed formal Paediatric Neurology and Neuromuscular Fellowships in the United States working in St Louis, USA. He has had extensive laboratory and clinical experience in a variety of immune-mediated neurologic syndromes, including GuillainBarré syndrome, Miller Fisher syndrome, multifocal motor neuropathy, chronic inflammatory demyelinating polyneuropathy (CIDP), myasthenia gravis, childhood multiple sclerosis and acute disseminated encephalomyelitis. As Director of Neurology at the Royal Children’s Hospital (RCH), Andrew has been able to continue clinical and laboratory research. The high profile of the department has meant that RCH has become a member of the Cooperative International Neuromuscular Research Group. This is a consortium of researchers developing treatments for the muscular dystrophies. In 2003, he established the Asia-Pacific IVIG in Neurological Disease Advisory Board. The committee developed “Expert Consensus Statements on the Use of IVIG in Neurology” with these released at the 1st Asia Pacific Symposium (INDAPS) as a satellite symposium of the Asian & Oceanic Congress of Neurology (AOCN) in Singapore in 2004. The statements are currently in a second edition and were released at the AOMC meeting in Melbourne in 2008. Dr David Hillman Respiratory & Sleep Medicine Physician, Dept of Health, WA David Hillman is a sleep physician at the Department of Pulmonary Physiology and Sleep Medicine at Sir Charles Gairdner Hospital in Perth, Western Australia and a director of the West Australian Sleep Disorders Research Institute. He is a respiratory physiologist, anaesthetist and sleep physician. His clinical and research interests focus on the physiology of the respiratory system and upper airway and their relationship to respiratory disease, sleep disorders and anaesthesia. He has published extensively in these and related areas. He is a fellow of the Australian and New Zealand College of Anaesthetists, the Royal College of Physicians of Edinburgh and an honorary fellow of the Royal Australasian College of Physicians. He is a Clinical Professor at the University of Western Australia and a past president of the Australasian Sleep Association and of the Society of Anesthesia and Sleep Medicine. He is founding chair of Australia’s Sleep Health Foundation, a national charity devoted to improving sleep health. Dr James Poysky Clinical Psychologist & Paediatric Neuro-psychologist, Katy, Texas Dr. James Poysky is a clinical psychologist and pediatric neuropsychologist. He is a Clinical Assistant Professor at Baylor College of Medicine, and also has a private practice. Dr. Poysky is an internationally-recognized expert on the behavior and learning issues associated with Duchenne muscular dystrophy (DMD), and is involved in research projects and clinical practice in this area. He regularly gives lectures on this topic around the world, and has written a book on this topic that was published in 2011 by the USA Parent Project Muscular Dystrophy (PPMD). Dr. Poysky serves as chair for the Psychosocial Expert Panel for the DMD Care Recommendations program (sponsored by the US Centers for Disease Control & Prevention), which were published in Lancet Neurology in 2010. He is also on the board of directors for PPMD (USA), and has a 12-year-old son with DMD. Dr Zoe Davidson Research Dietician, Royal Children’s Hospital, Melbourne Dr Zoe Davidson is an Accredited Practising Dietitian specialising in the nutritional management of neuromuscular disorders. Zoe’s doctoral research focused on advancing the evidence base for the nutritional management of boys with Duchenne muscular dystrophy. Zoe is continuing research in this area in a postdoctoral post with Murdoch Children’s Research Institute and Monash University with a specific focus on energy expenditure and body composition in children with neuromuscular disorder. Zoe is also coordinating a multicentre trial investigating the use of nutriceuticals in DMD. Miss Cheryl Lockwood Manager Assistive Technology, Rocky Bay BSc Hons Biological Sciences, Grad Dip Physiotherapy, Diploma of Management, Churchill Fellow 2005 Cheryl trained in the UK as a Physiotherapist, where she specialised in community paediatrics. It was here she gained her early experience in supporting individuals with Muscular Dystrophy. Since 1994, she has worked in Perth for a number of organisations including the Centre for Cerebral Palsy, Nulsen, Brightwater Care Group and Rocky Bay. Her experience covers a broad range of conditions and all age groups. Cheryl’s passion for seating and positioning lead her to develop a broader interest in assistive technology and how it can assist people with disabilities to achieve greater independence and participation. For the past seven years Cheryl has managed Rocky Bay’s assistive technology department where she oversees a team of skilled and dedicated therapists and technical staff. She is the proud mother of two young adults, Sam and James. Mrs Lisa Papas Manager of Counselling & Social Welfare, MS Society Lisa Papas has worked in the field of Human Services for 30 years. The first 10 in the area of disability and the last 20 in psychological services as a counsellor working in the areas of Health, Substance Use, Sexuality and Grief and Bereavement. Lisa is the Manager of Counselling and Social Services at the MS Society of WA where she has worked for the past 8 years. Lisa is passionate about psychological services being available when you are living with a chronic and life long illness. She frequently witnesses the benefit of counselling work and the way it can empower clients. Mr Dylan Needham President, Western Electric Sporting Association Dylan Needham started playing Electric Wheelchair Sports with the Western Electric Sporting Association in 2005. In 2007, he made the State Team and went on to win joint Rookie of the Year at Nationals. Dylan named Junior Disabled Sports Star of the Year in 2009 and WA Best and Fairest in 2011. Since 2012 Dylan has been on the WESA committee as Treasurer and has recently become President. Dylan is studying Economics at UWA and has completed the Bronze Duke of Edinburgh Award through my wheelchair sports, creating a family tree and going to Rottnest Island. More recently, Dylan has been part of the Western Australian Powerchair Football Association. In his spare time, Dylan is an avid supporter in watching sport, including soccer, footy and cricket. Mr Rob Kerr Project Support Officer for The Duke of Edinburgh International Award Robert joined the Muscular Dystrophy WA team in October 2014. With tertiary qualifications in Commerce. He has experience in the community service sector and has worked with a wide variety of youth. Robert plays soccer, rugby and hockey at a national level for the Western Wasps. With his personal experience and understanding of Muscular Dystrophy Robert is able to help and support the Muscular Dystrophy WA Duke of Edinburgh Award participants. Mr Anthony Ambrosini The Duke of Edinburgh International Award Silver Participant Anthony Ambrosini is 19 years of age and has Duchenne muscular dystrophy. Anthony lives at home with his mum and dad, my older brother and two older sisters, two poodles named Max and Zeus. Anthony plays electric wheelchair sports at Rocky Bay, which includes hockey, soccer and rugby. This is something he really enjoys. Anthony’s state team won the Hockey Trophy for 2015. In early April he will represent WA at Nationals in Sydney, which is a great opportunity and a lot of fun. Anthony is also the web administrator for his sporting club. Anthony is currently completing his Silver Duke of Edinburgh Award, having completed my bronze last year. He says the Award has allowed him to challenge himself and do things he never thought he would do. Anthony really enjoy playing play-station, wheelchair sports, going to the movies and concerts, playing board games with family and friends. He is a member of the West Coast Eagles and loves going to games and watching them win. Anthony also enjoys socialising with friends and spending time with his cousins. Mr Hayden Stevens Comedian, coach & disability advocate Hayden Stevens is 37 years old and lives with muscular dystrophy. He has worked as a mentor for young people with disabilities and a disability advocate through his public speaking and various media appearances. Recently he has entered the stand-up comedy scene. Over the past three years he has appeared in the state final of the raw national comedy competition three times and has performed four times at his majesties theatre in front of 1200 people. chairs Dr Caroline Graham BSc. PhD Dr Caroline Graham manages the Service Planning Branch of the Office of Population Health Genomics at the Western Australian Department of Health. Dr Graham provides advice and recommendations to establish policies and programs in relation to state-wide genetic health services. She is developing strategies to translate new genomics knowledge, informatics and technology that improve the outcomes for people with rare or genetic disease. Dr Graham is a member of RD-Connect, a global collaborative infrastructure project and coordinates the establishment and partnering of Australia-wide registries and biobanks. She leads the population cohort study analysing the impact of rare diseases on the Western Australian health system. Dr Snehal Shah Dr Shah is a fully trained Paediatric Neurologist under The Royal Australasian College of Physicians, Australia. She completed her paediatric training at Royal Children Hospital and Monash Medical Centre, Melbourne. Further to that Dr Shah undertook Paediatric Neurology training at Monash Children Hospital Melbourne and at Princess Margarat Hospital for Children, Perth. After completing her training in Perth and Melbourne, she went to work as Research fellow at The Hospital for Sick Children, Toronto, Canada where she completed a year in research related to seizures and strokes in Children. Dr Shah is currently working as Consultant Neurologist at Princess Margaret Hospital for Children. She also does private practice at Perth Paediatrics,West Leederville and at Wexford Medical Centre at SJOG Hospital Murdoch. Dr Shah has special interests in seizure disorders & headaches in children. Dr Shah is married and is mother of two children. Family is very important to her. Mrs nita vorster Nita is a Physiotherapist whose career covered working over a long period in Australia and South Africa with children, their families and adults affected by Neuromuscular Disorders, Disabilities and Developmental Delays. She worked at Rocky Bay for 12 years and is currently working at the Child Development Centre in West Perth. She has keen interest in the respiratory management of individuals with muscular dystrophy.
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