The AusACPDM are thrilled to bring an exciting collection of Visionary speakers to our 2020 Meeting in Perth.
Professor Jan Willem Gorter
Jan Willem Gorter, MD, PhD, FRCP(C) Physical Medicine and Rehabilitation, is a Professor in the Department of Pediatrics in the School of Rehabilitation Science at McMaster University. He is Director and a scientist at CanChild Centre for Childhood Disability Research (www.canchild.ca) and holds the Scotiabank Chair in Child Health Research at McMaster University. He is visiting professor in Pediatric Rehabilitation in Utrecht, The Netherlands.
Jan Willem has training in pediatric and adult rehabilitation medicine (physiatry) with a special clinical and research interest in transitional services and life course health development. His research focuses on the themes of family, function, friends & fun (daily activities and participation) with a special interest in physical activity promotion (fitness) and in transitions from adolescence to adulthood (future).
Jan Willem’s vision is to enhance the physical health, mental health and well-being of children and youth with disabilities/chronic health conditions and their families through interventions carefully tailored, timed and integrated into health services. He leads a research program that advances the knowledge of health development of people with disabilities, and that enhances research capacity through mentoring and training. Jan Willem’s research is frequently published in peer-reviewed articles in leading journals.
Professor Nadia Badawi AM
Professor Badawi AM is an active clinician and researcher. She is the Macquarie Group Foundation Professor and Chair of Cerebral Palsy (CP) at the Cerebral Palsy Alliance Research Institute, The University of Sydney, and is the Medical Director and co-Head of the Grace Centre for Newborn Care, at The Children’s Hospital Westmead.
Over the past decade Cerebral Palsy Alliance Research Foundation has grown to become a global leader in, and the world’s largest private funder of research into cerebral palsy, and the research team there share an unwavering commitment to people with cerebral palsy and their families. Professor Badawi has been part of the team who have established the Australian and International Cerebral Palsy registers and has worked tirelessly to establish networks for cooperative research and knowledge sharing around the world. She is committed to bringing people together to facilitate the most effective research outcomes to benefit children and their families. Professor Badawi’s reputation as a leading authority on newborn encephalopathy and cerebral palsy has ensured some of the world’s best research minds are now working collaboratively and proactively to find ways to prevent cerebral palsy and to establish best practice interventions to help people with cerebral palsy live as full a life as possible. At the behest of people with cerebral palsy and their families she also supports research on neuro-regeneration and the search for a cure. Through her work as a practising doctor, her research there has focussed on improving the survival and outcomes for babies in neonatal intensive care and she is gratified by the remarkable increase in survival and the significant drop in disability among NICU graduates.
Her dedication, commitment and determination have put cerebral palsy research under the international spotlight, and the results have been ground breaking. She is a Chief Investigator on two Centres for Research Excellence and numerous other NHMRC project grants. She was selected by NHMRC as one of Australia’s researchers changing the world. Professor Badawi was awarded a Member of the Order of Australia AM (2014) for significant service to paediatrics and neonatal intensive care medicine as a clinician and researcher, and for her leadership and promotion of research into cerebral palsy. She enjoys working with graduate students from a variety of health professions.
Professor Badawi’s vision is to see the prevention of cerebral palsy realised while also partnering with people with cerebral palsy and their families to improve treatments and inclusion in all aspects of society. Less than a decade ago, most people believed prevention of cerebral palsy was not likely. However, with the recent drop in the rate of cerebral palsy in Australia, medical science’s attitudes are changing thanks to collaborative efforts of families, health professionals and researchers around the world, alongside advances in assistive technology, brain-imaging technology, stem-cell science, gene therapy and metabolic research.
Professor Roslyn N Boyd, PhD, PT
Ros Boyd is a paediatric physiotherapist and neuroscientist with expertise as in conducting Clinical trials for interventions for infants children and youth with Cerebral Palsy. She leads a nationally funded (NHMRC) Centre of Research Excellence “The Australasian Cerebral Palsy Clinical Trials Network” and is Scientific Director of the Queensland Cerebral Palsy and Research Centre at the University of Queensland. Prof Boyd’s clinical trials have tested the efficacy of novel interventions including Upper limb training, participation focused interventions, FES cycling, parenting interventions incorporating mindfulness and early intervention in low resource settings (>17 RCT’s). The network has undertaken national implementation of the early detection of cerebral palsy, fast tracking infants to five current early intervention trials and linking comprehensive outcomes to brain structure and function. She has received >Aus $35M in funding with 280+ publications and with her coauthors was awarded the international Gayle Arnold Award on 3 occasions (2010, 2011 and 2014). Prof. Boyd graduated as a physiotherapist (BAppSc 1981) from University of Sydney and completed a Postgrad in Biomechanics at the University of Strathclyde (1997), MSc in Physiotherapy at University of East London (2001) followed by PhD at LaTrobe University (2004). Ros has a vision where all infants at risk of adverse neurodevelopmental outcomes (including CP) would be accurately identified soon after the injury (prior to birth and or soon after birth), be fast-tracked to receive neuroprotective therapies and very early rehabilitation to optimize neuroplasticity and support parents with preventative care. The stretch goal is that fewer children would have Cerebral palsy and those that did would have better outcomes and would be in well supported families to become contributing members of society.
Professor Andreas Meyer-Heim, MD
Andreas Meyer-Heim is the Chief Medical Officer of the Rehabilitation Centre Affoltern am Albis and Division of Rehabilitation at the University Children’s Hospital in Zurich, Switzerland. He is a Doctor of Medicine (MD), Paediatrician and PD (private lecturer) at the University of Zurich and associate lecturer at the Zurich University of Applied Sciences in the field of paediatric rehabilitation.
He is co-chairman of the Swiss Academy of Childhood Disability), past board member of the Swiss Society of NeuroRehabilitation), group leader at the Neuroscience Centre Zurich member of the Rehabilitation Initiative & Technology Platform Zurich and was joint member in the Clinical Research Priority Program Neuro-rehabilitation: strategies for customised treatments of the University Zurich. He focuses on novel therapeutic approaches for sensory-motor learning in children with central nervous system disabilities. His special interest is in the development, clinical application and research of effectiveness of a variety of therapies in paediatric rehabilitation especially robot-assisted and computer-based methods.
Dr Meyer-Heim’s vision is cooperation, cooperation, cooperation! The key factor for future improvements in the treatment of cerebral palsy lies in the close liaison between neurosciences, therapies, pharmacology, engineering, epidemiology, prevention measures and politics.
Professor Katherine Hustad
Katherine Hustad, Ph.D., CCC-SLP, is Professor of Communication Sciences and Disorders at the University of Wisconsin – Madison. She is also an investigator at the Waisman Center.
Professor Hustad’s research focuses on characterizing and enhancing speech, language and communication development and outcomes in children with cerebral palsy. She also studies variables that influence speech intelligibility with a special emphasis on augmentative/alternative communication interventions.
A primary objective of her work is to generate a theoretically driven, data-based longitudinal models of speech and language development in cerebral palsy that can be used to predict outcomes, develop and test interventions, and guide treatment decisions. Professor Hustad has a strong interest in bridging research with clinical practice. Her work has been funded by the NIH (NIDCD) since 2003.
Professor Hustad’s vision is that we will continue to improve and ultimately perfect our ability to identify very early risk factors, signs, and symptoms of speech, language, and communication challenges in children with CP. We can then begin providing speech, language and communication therapies in the first months and years of life that are uniquely suited to individual children’s profiles of strengths and challenges to optimize their ability to develop to their fullest potential and to participate maximally in their lives.
Rachel is a TEDx presenter, speaker, trainer, award winning artist and the author of the Outstanding Book of the Year Award 2015 IPPY New York, Super Power Baby Project. This exceptional book celebrates the lives and abilities of children with chromosomal or genetic conditions, and was inspired by Rachel’s late daughter Evie, who was born with a very rare condition herself. In the two and a half years of Evie’s life, Rachel learnt a lot about the use of language in the health system, and has spent the subsequent years continuing to explore the impact and implications of how it is used by health professionals – To positive and negative effect. This book is Evie’s legacy, as is Rachel herself, and both have much to teach us about ourselves, and how we negotiate conflict, grief, hope, uniqueness, celebration, and a meaningful life.
She speaks about the need to communicate using empowering language, especially at diagnosis. She teaches how the first words used at diagnosis critically shape how a parent or patient perceives their future: The words can allow the parent/patient to be their best, and find meaning even in pain; or they can create anger, mistrust, frustration, and can break down the crucial relationship between the parent or patient and the health professional. It’s a conversation about empowerment – For the patient, parent and for the health professional.
Rachel also works with executives and leadership teams to facilitate positive culture change, and to build systems to reflect new thinking around what effective communication looks like and how it can be measured for better health results and positive patient experiences.
Dr Graeme Innes AM
Graeme Innes AM is a lawyer, author, and company director. His autobiography Finding a Way achieved popular acclaim in 2016.
He has been a human rights practitioner for more than thirty years, and is a conference presenter and facilitator.
Graeme was a Commissioner at the Australian Human Rights Commission for almost nine years, responsible for issues relating to disability, race and human rights, and chairs the Attitude Foundation, a start-up using media to change attitudes towards Australians with disabilities. On the international stage, he was a member of the Australian delegation that participated in negotiating the UN Convention on the Rights of People with Disabilities.
He is a director of
The NSW State Insurance Regulatory Authority,
Life Without Barriers, and
Price Waterhouse Cooper’s diversity board.
Since 2014, Graeme has received four Honorary Doctorates in recognition of his human rights advocacy.
Graeme is married with two children, loves cricket as a spectator and sailing as a participant, and relaxes by enjoying fine Australian white wine.
Dr Domenico M. Romeo
Dr Domenico M. Romeo is the Medical Director at the Pediatric Neurology Unit of the Fondazione Policlinico Gemelli-IRCCS and Assistant Professor at the Catholic University of Rome, Italy. Domenico graduated in Medicine and Surgery with Honours in 2002 and Board in Child Neurology and Psychiatry. He had also obtained a PhD in child neuropsychiatry in 2011 and a master’s degree in paediatric neurology in 2012. Dr. Romeo has a broad experience in educating future generations of medical clinicians and health professions, as he had lectured in paediatric neurology at the University of Catania, Florence and Rome. He is part of the coordination group of the Registry of Cerebral Palsy in Italy and in Europe, and had served on the board of the UILDM Association (muscular dystrophy).
As a child neurology specialist, his research focuses on cerebral palsy, sleep disorders, developmental delays, neurological outcomes and early diagnosis in low and high-risk infants. Dr Romeo is best known for his work on the standardisation and application of the Hammersmith Infant Neurological Examination (HINE) contributing to the implementation and the dissemination of the examination. He has also compared the HINE with general movements, neuroimaging and neurodevelopmental assessments in the prediction of outcomes such as Cerebral Palsy and in the differential diagnosis of other Neurodevelopmental Disabilities. His Longitudinal cohort (>1000 infants at risk of CP) has provided an enormous contribution to the prediction of outcome of at risk infant’s and also continues to contribute to the understanding of the early Natural History of infant’s with Cerebral palsy.
Dr Romeo’s participation in the conference is being supported by the CTN-CRE and the University of Notre Dame Australia.
Dr Margaret Wallen PhD MA BAppSc (OT)
Margaret is an occupational therapist with a long-standing interest in paediatric research, outcome measurement and evidence-based practice. Her research interests have focused on upper limb interventions in infants and children with cerebral palsy including constraint-induced movement therapy, bimanual interventions, wrist/hand orthoses and effects of occupational therapy and Botulinum toxin-A injections.
She is passionate about consumer engagement in research and was honoured with a Churchill Fellowship which enabled her to harness the knowledge and expertise of eminent international research centres respected for their partnership with consumers, and applies the learnings to cerebral palsy research locally.
Margaret is a senior lecturer and course coordinator for occupational therapy at Australian Catholic University in North Sydney.
Anne McKenzie AM
Anne McKenzie has had professional and voluntary roles as a consumer advocate for the past twenty-five years. Since 2004 Anne has worked in research organisations to increase the community voice in research. In 2016 established the Consumer and Community Health Research Network which is a key platform of the WA Health Translation Network. In April 2019 Anne commenced in a new role as the Community Engagement Manager at the Telethon Kids Institute.
Anne is a senior consumer representative for Consumers Health Forum of Australia and is a former Chair of Health Consumers Council WA. She serves on key state and national health and research committees such as the National Health and Medical Research Council, the Department of Health, the National Prescribing Service and the Australian Commission on Safety and Quality in Healthcare.
In 2015 Anne was appointed to the Order of Australia for her work in health service and research.
Bernard Dan is a paediatric neurologist and rehabilitation physician based in Brussels, Belgium. He is professor of neuroscience at the Université libre de Bruxelles, medical director of Inkendaal Rehabilitation Hospital, and Editor-in-Chief of Developmental Medicine and Child Neurology. His clinical and research interest includes cerebral palsy, neurogenetic conditions and neurophysiology. He was the 2010 president of the EACD and chaired the scientific committee of the academy until last year. He wrote over 250 articles in top-ranking journals, textbooks on Angelman syndrome, childhood disability, and co-edited a major reference book on cerebral palsy and one on ethics in childhood neurodisability. He served as scientific curator for several art exhibitions relating to disability and authored novels and short stories.
Dr Cathryn Crowle
Presenting on: Use of the General Movements Assessment with Infants Following Surgery in the Neonatal Period
Cathryn Crowle is a Senior Occupational Therapist and Co-Lead of Research in the Grace Centre for Newborn Intensive Care, The Children’s Hospital Westmead. She holds a conjoint appointment as Clinical Senior Lecturer in the Discipline of Child and Adolescent Health, Faculty of Medicine and Health at the University of Sydney.
Completing her BAppSc (Occupational Therapy) with Honours in 1994, Dr Crowle has worked as an occupational therapist in paediatric disability for 25 years. With an interest in cerebral palsy and multiple disability she completed her Masters in Special Education (Vision & Hearing Impairment) in 2002 at the University of Newcastle. Through her work in the NICU at the Children’s Hospital Westmead Dr Crowle completed her PhD in 2018 through the Faculty of Medicine, University of Sydney, investigating the early detection of cerebral palsy in infants with congenital anomalies.
Dr Crowle’s research interests have focussed on the use of the General Movements Assessment and the developmental outcomes of cardiac and surgical infants and she continues this work in collaboration with researchers both nationally and internationally.
Dr Crowle’s vision is that we will improve our ability to identify infants at risk of adverse neurodevelopmental outcomes, particularly cerebral palsy, and provide evidence based early therapies to achieve the best outcomes for infants and their families.
Dr David Hobbs
Presenting on:Can a Novel ‘Serious Gaming’ Technology Improve Upper Limb Sensation and Function in Children with Cerebral Palsy? A Population-based Cohort Study and Pilot Randomised Controlled Trial
David is curious by nature and has a passion for learning, which probably explains the fact he has two undergraduate bachelor degrees (one in Physics and the other in Biomedical Engineering) and a PhD in Rehabilitation Engineering. He has extensive experience as a Rehabilitation Engineer in the field of disability, rehabilitation engineering and assistive technologies, and is currently a Senior Lecturer and academic staff member within the College of Science and Engineering and a researcher within the Medical Device Research Institute at Flinders University.
David’s professional honours to date include being awarded a Churchill Fellowship in the field of rehabilitation engineering and Universal Design; Engineers Australia’s Young Professional Engineer of the Year; Engineers Australia’s Top 100 Most Influential Engineers; a Fulbright Professional Scholarship in the field of paediatric rehabilitation engineering, and a Distinguished Alumni Award from Flinders University.
David’s passion in life and reason for waking up is to maximise the impact and accessibility of assistive technologies to improve the lives of people with a disability. He has experience working in rehabilitation engineering research and industry institutions in Australia, England, Canada and the United States, holds a patent for his PhD work, and has twice won first prize in the College of Biomedical Engineers’ Better Technology Awards for novel assistive technologies. David is an invited TEDx speaker, has delivered numerous invited and keynote presentations, and has represented Australia at the Global Research, Innovation, and Education in Assistive Technology (GREAT) Summit at the WHO in Geneva.
Dr David Hobbs’ vision is for a global collaborative, connected and equitable sector that harnesses the power of inter-disciplinary expertise to deliver meaningful and affordable devices to improve the lives of people living with impairment.