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.