Jan Willem Gorter, MD, PhD, FRCP (C) CanChild Centre for Childhood Disability Research Department of Pediatrics, McMaster University, Hamilton, ON Canada.
Title: Turn the Tide on Transition to Promote Participation
More young people with disabilities grow up and become adults living in the community. Worldwide, there is a need for better transitional care for adolescents with disabilities and their families leaving the pediatric care system. What can be done to turn the tide on transition? This presentation will focus on an approach to promote meaningful participation outcomes in adulthood and includes innovative eHealth strategies to help young people prepare for their future.
Jan Willem Gorter, MD, PhD, FRCP(C) is Director of CanChild, Professor of Pediatrics and Scotiabank Chair in Child Health Research at McMaster University in Canada.
Jan Willem has training in pediatric and adult physical medicine and rehabilitation with a special clinical and research interest in healthcare transition and lifecourse health development. He has extensive clinical and research experience in the transition to adulthood and leads a teen-transition clinic for adolescents with disabilities and their families at McMaster Children’s Hospital.
He chairs the national Transitions’ Community of Practice in Canada and has co-lead and co-authored Ontario’s and Canada’s Transition guidelines, respectively. Jan Willem has developed the Transition-Q measure and the MyTransition App. He currently is (co) principal investigator on various eHealth transition intervention studies.
Jan Willem has published extensively including 170 peer-reviewed publications in leading journals and 16 chapters in books, including transition to adulthood and ethical issues in transition.
BRYCE JOHNSON, USA
Bryce Johnson, Inclusive Lead, Product Research & Accessibility Microsoft Corporation, Microsoft Devices, Seattle, USA
Title: The Xbox Adaptive Controller, Intentionally including gamers with limited mobility
Bryce Johnson has been designing accessible experiences and technology for over 15 years. As a member of Team Xbox he was part of the core team that started the inclusive design and accessibility practice. Bryce worked across Microsoft teams to launch the assistive technologies on the Xbox One, including Copilot. Bryce initiated and designed the very first Inclusive Tech Lab at Microsoft, which has now hosted over five thousand visitors; it is a facility where people can explore how gamers with disabilities interact with Microsoft games, services, and devices. Bryce has also been a member of the Xbox Adaptive Controller team ever since he was a lead on its inception as a hack project at the 2016 Microsoft Oneweek Hackathon. Bryce is now the Inclusive Lead for Microsoft Devices where he is devoted to ensuring our products are accessible.
LEE RIDLEY (« LOST VOICE GUY »), UK
Lee Ridley (« Lost Voice Guy »), Stand-up comedian UK
Lee won Britain’s Got Talent in 2018 and the BBC New Comedy Award in 2014. Lee’s other credits include I Just Called To Say… (Sky Arts), Ability (BBC Radio 4), The One Show (BBC One), Breakfast (BBC One), This Morning(ITV), Lorraine (ITV) and Comedy Central At The Comedy Store (Comedy Central UK).
Lee made his first stand-up performance in February 2012 and now gigs all over the country for many of the major comedy bookers and clubs such as The Stand, Glee, The Frog & Bucket, Hilarity Bites and Funhouse Comedy. He has also supported Patrick Kielty and Ross Noble on tour. In 2013 Lee took his first ever solo show to the Edinburgh Fringe and has performed a show there every year since. He has also performed at the Brighton Fringe, Glasgow International Comedy Festival, Leicester Comedy Festival, Nottingham Comedy Festival and Liverpool Comedy Festival.
Lee has told jokes/given motivational speeches for a range of charities and organisations including Barclays, Scope and The Royal College of Nurses. He is also a patron of Smile For Life, Find A Voice, Communication Matters and The Sequal Trust.
SUE FLETCHER WATSON, UK
Sue Fletcher Watson, Senior Research Fellow Patrick Wild Centre, University of Edinburgh
Title: Merging psychological theory with a neurodiversity framework for better autism interventions.
The neurodiversity movement emphasises natural variability in the way that different people’s brains work. It is associated with the disability rights and autistic rights movement, which calls for greater understanding of autism (and other neurodevelopment conditions) in terms of differences rather than deficits. Taken at face value, the neurodiversity principle seems to be hard to reconcile with the high levels of need often encountered in clinical and education settings. Can we adopt a neurodiversity framework while also providing evidence-based supports where they are needed? In this talk Sue Fletcher-Watson will describe how a progressive model of autism can be combined with psychological theory and participatory methods to deliver evidence based interventions without compromising respect or scientific integrity.
Sue Fletcher-Watson is a Senior Research Fellow at the Patrick Wild Centre, University of Edinburgh. She is a developmental psychologist, studying how children grow and learn, with a particular focus on non-normative experiences, such as autism and preterm birth. Her work aims to apply rigorous methods from psychology to questions with clinical, educational and societal impact. Current research themes include: investigations of how digital interactive technologies can best be deployed to support learning and personal growth for autistic children; describing the impact of bilingualism on cognitive development and life experiences in autistic people; and innovative empirical tests of the ‘double empathy problem’ in the context of interaction between neurodivergent and neurotypical adults. She strives to achieve meaningful partnerships with community representatives and to support neurodivergent leadership in research. She is a recipient of the British Psychological Society Margaret Donaldson Award and a Certificate of Excellence from Autism Rights Group Highland.
YANNICK BLEYENHEUFT, BELGIUM
Yannick Bleyenheuft, PT, PhD Professor at the Institute of Neuroscience, Université catholique de Louvain, Brussels, Belgium
Honorary attached to the Center for Cerebral Palsy Research of the Teachers College, Columbia University, NY, USA
Title: HABIT-ILE, an intensive intervention increasing autonomy and participation in children with cerebral palsy.
Hand and Arm Bimanual Intensive Therapy Including Lower Extremities has gained a growing interest since its development in 2011. This motor-skill learning based intervention uses functional goals defined by the children and their parents to promote autonomy and participation. Its effectiveness has been demonstrated in children with both unilateral and with bilateral CP, and the observed functional improvements have shown a link to neuroplastic changes. This keynote will focus on the key principles of HABIT-ILE, the improvements obtained in different subgroups of children with CP at the level of motor and non-motor functions, and the changes induced in autonomy and social participation
Yannick Bleyenheuft, PT, PhD, is Professor at the Institute of Neuroscience, Université catholique de Louvain, Brussels, Belgium and honorary attached to the Center for Cerebral Palsy Research of the Teachers College, Columbia University, NY, USA. Yannick Bleyenheuft has training in physiotherapy and rehabilitation, with a complementary degree in neuroscience and a PhD in movement sciences dedicated to the motor control of children with cerebral palsy (CP). She is currently holder of the first Chair fully dedicated to intensive neurorehabilitation in children with CP and has developed HABIT-ILE, an intensive intervention combining bimanual coordination with a constant lower extremity and/or postural stimulation, which has been successfully applied both in children with unilateral and with bilateral CP. Her research group the « motor skill learning and intensive neurorehabilitation lab » is committed to improving the autonomy and participation of children with CP, notably through the understanding of motor control alterations and the development of therapeutic models based on motor skill learning, as well as the neuroplastic changes associated with these therapies. Her work is currently supported by the Fonds de Soutien Marguerite-Marie Delacroix (Belgium), the Fondation JED-Belgique (Belgium) and the Fondation Paralysie cérébrale (France).
MILLER FREEMAN, USA
Miller Freeman, M.D. Last Co-director of the Cerebral Palsy Program and the Clinical Director of the Gait Analysis Laboratory at the A.I. duPont Hospital for Children,
Title: Future Options for Managing Complex Multi-system Disabilities
Dr Miller was Co-director of the Cerebral Palsy Program and the Clinical Director of the Gait Analysis Laboratory at the A.I. duPont Hospital for Children for 30 years. His clinical practice of pediatric orthopedics is limited to children with cerebral palsy. Reseach interests include investigation of surgical outcomes of CP surgery through gait analysis; mathematical modeling of the hip joint in children with CP, hip monitoring and management for children with CP, and management of spinal deformity in CP. Dr. Miller has published approximately 200 articles in peer reviewed journals, has published a book Cerebral Palsy: A Guide for Caregiving directed at families and is now in the 3rd edition. A medical textbook, Cerebral Palsy outlining musculoskeletal care of the child with cerebral palsy was published in 2005 by Springer-Verlag with 2nd edition expected on 2019. He has been invited to give many lectures in 35 different countries.
DAPHNE BAVELIER, SWITZERLAND
Daphne Bavelier, Pr FPSE, University of Geneva
Title: Learning and transfer: Lessons from action video games
Action video game players outperform their non-action-game playing peers on various sensory, attentional and cognitive tasks. A training regimen whose benefits are so broad is rather unprecedented and provides a unique opportunity to identify factors that underlie generalization of learning and principles of brain plasticity. We propose that a common mechanism is at the source of this wide range of skill improvement. In particular, improvement in performance following action video game play results from greater learning to learn abilities. We will see that behavioral and neural markers of attentional control are enhanced in gamers, allowing them to better focus on the task at hand and ignore distractors or sources of noise. Such focus on task-relevant statistics appears to allow for not only more informed decision making but also faster learning and greater transfer. Practical applications from education to rehabilitation will be discussed
Daphne Bavelier is an internationally-recognized expert on how humans learn. In particular, she studies how the brain adapts to changes in experience, either by nature – for example, deafness – or by training – for example, playing video games. Her lab established that playing fast-paced, action-packed entertainment video games typically thought to be mind-numbing actually benefits several aspects of behavior. Exploiting this counter-intuitive finding, the Cognitive Neuroscience research team she now heads at the University of Geneva, Switzerland investigates how new media, such as video games, can be leveraged to foster learning and brain plasticity.
Bavelier is a co-founding scientific advisor of Akili Interactive, a company which develops clinically-validated cognitive therapeutics that exploit video games, and has contributed as an expert for the World Economic Forum in domains as varied as Education (New Vision for Education: Unlocking the potential of technology) or Human Enhancement (World Economic Forum Global Future Council on Human Enhancement).
BERNARD DAN, BELGIUM
Bernard Dan, Paediatric neurologist and rehabilitation physician Université libre de Bruxelles and Inkendaal Rehabilitation Hospital
Title: Human enhancement: from disability to hyperability
Bernard Dan is a paediatric neurologist and rehabilitation physician based in Brussels. 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.
MATTHIEU CHATELIN, FRANCE
Matthieu Chatelin President of the Friends of the Cerebral Palsy’s Foundation Societye
Titre: l’inclusion au service de l’innovation et de la participation
Matthieu, 30 years old, was born at 25 weeks. Due to his very premature birth, he has got a cerebral palsy with secondary deficiencies. He receives assistance from PA’s for the 24 hours care he requires.
Matthieu obtained two Masters of Arts in the fields of Human Rights and International relations, thanks to the studies he completed both at University College London and the American University of Paris. He lived in London for several years prior to coming back in France during 2015.
He is a strong advocate in terms of Disability Rights and Human Rights at the international level. Following a United Nations volunteering which he undertook at the European Arm of the Office of the UN High-Commissioner for Human Rights, Matthieu carries on with his duties as an elected official.
Since 2015, he sits at the European Disability forum and since 2017 he equally serves as a delegate at the 4th European Parliament of persons with disabilities.
ROSLYN BOYD, AUSTRALIA
Roslyn Boyd, Pr Queensland Cerebral Palsy and Rehabilitation Research Centre, Faculty of Medicine, The University of Queensland
Title: Active ingredients of rehabilitation for children with Cerebral Palsy
Professor Boyd 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 (17 RCT’s), early detection of cerebral palsy, and longitudinal comprehensive outcomes linked to brain structure and function. She has been an invited participant for 3 international summits on Management of CP in high and low resource countries (2013); Early Detection and Early Intervention (2014, 2015) and Management of Neonatal Stroke (2016). She has received >Aus $35M in funding with 275+ 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).
LEANNE SAKZEWSKI, AUSTRALIA
Leanne Sakzewski, Dr Queensland Cerebral Palsy and Rehabilitation Research Centre, Faculty of Medicine, The University of Queensland
Title: Unmasking the black box of participation-focused therapy for children with cerebral palsy
Dr Sakzewski is a senior research fellow with the internationally recognised Queensland Cerebral Palsy and Rehabilitation Research Centre at the University of Queensland. Dr Sakzewski is leading nationally funded (NHMRC) multi-centre clinical trials testing the efficacy of intensive models of motor training, social skills programs and participation-focused therapy to enhance the functioning and quality of life of children with cerebral palsy. She has received >Aus$10M in funding with 55+ publications. Dr Sakzewski graduated as an occupational therapist (BoccThy 1988) from The University of Queensland and completed her PhD at the University of Queensland in 2010. She has held continuous fellowships since completion of her PhD including training in implementation science through a NHMRC Translating Research into Practice Fellowship.
Title: How Cerebral Palsy gave me a career in Tech
Farida Bedwei is a software engineer who co-founded a fintech company – Logiciel, which promotes financial inclusion by building micro-banking systems for financial institutions. She has won many awards across Africa for her work in the technology industry as well as her activism in promoting disability awareness. She has been featured on CNN African Voices, BBC, MSNBC Africa, DW Radio, and many other local and international media platform. She is also a self-published author, having written her first book, “Definition of a miracle”, a few years ago. In October 2018, Farida teamed up with Leti Arts to author the first comic book featuring a superheroine with Cerebral Palsy, called Karmzah
ARNOLD MUNNICH, FRANCE
Arnold Munnich, Professor of Genetics, University Paris-Descartes & President, Imagine Foundation
Title: Genetics in Childhood Neurodisability : progress and ethical challenges
Arnold Munnich is Professor of Genetics at University Paris-Descartes since 1989 and the acting president of the Imagine Foundation. He studied medicine in Paris and received his MD degree in 1979 and his PhD in Biochemistry in 1988. He is board certified in Paediatrics and in Medical Genetics in 1983. His main research interests are Genetics and Epigenetics of Neurometabolic Diseases and Birth Defects. He is the author or co-author of more than 900 publications in peer-reviewed journals since 1980. He has been a member of several international editorial review boards, including the Journal of Medical Genetics, European Journal of Human Genetics, Human Genetics, Human Mutation and Clinical Genetics. He served as scientific and medical advisor of the President of the French Republic, Nicolas Sarkozy between 2007 and 2012. He is a member of the American Society of Human Genetics, European Society of Human Genetics and the French National Academy of Science. He was awarded the Grand Prix Inserm in 2000, the European Society of Human Genetics award in 2008 and the Claude Bernard award of the Ville de Paris in 2013.