Day 1 Speakers
Dr. Majnemer is an occupational therapist with doctoral training in the neurosciences at McGill University (MSc, PhD). She is currently a Professor at the School of Physical & Occupational Therapy, and is an Associate Member of the Departments of Pediatrics and Neurology & Neurosurgery at McGill University. Dr. Majnemer's research interests focus on the developmental, functional and quality of life outcomes of children with disabilities and their determinants. Populations of interest include preterm infants, children with congenital heart defects following open-heart surgery, children with cerebral palsy and developmental delay. She is currently lead of a patient-oriented research network called CHILD-BRIGHT that engages over 200 stakeholders in research, training, knowledge translation and citizen engagement platforms, collectively aimed at promoting brighter futures for children with disabilities.
Frank Gavin is the Chair of CHILD-BRIGHT’s Citizen Engagement Council and a member of the Network’s Steering and Executive Committees. He chaired the Family Advisory Committee at the Hospital for Sick Children (1997-2001), founded and chaired the Canadian Family Advisory Network (CFAN), and now serves as CFAN’s national liaison. He recently completed two terms as a public member of the Canadian Drug Expert Committee and remains a board member of the Ontario SPOR Support Unit. Frank taught English at Centennial College in Toronto for nearly 30 years and twice chaired the department.
Dr. Jonathan Weiss is an Associate Professor in the Department of Psychology at York University and Clinical Psychologist. He completed a predoctoral residency at Surrey Place Centre (Toronto, ON), and a postdoctoral fellowship at the Centre for Addiction and Mental Health and University of Toronto, Dept. of Psychiatry. He currently holds the federal Chair in Autism Spectrum Disorders Treatment and Care Research. His research focuses on the prevention and treatment of mental health problems in people with Autism Spectrum Disorder or intellectual disabilities. He studies the impact of stressors, such as bullying or transitions, and how cognitive behaviour therapy can help youth with Autism Spectrum Disorder who have mental health problems. Dr. Weiss conducts studies of the changing service needs and barriers to service use for individuals with Autism Spectrum Disorder and their families across the lifespan. Dr. Weiss holds the CIHR Chair in Autism Spectrum Disorders Treatment and Care Research, as well as operating funds from the Canadian Institutes of Health Research and Social Sciences and Humanities Research Council.
Dr. Kirton is Professor of Pediatrics and Clinical Neurosciences at the University of Calgary and an attending Pediatric Neurologist at the Alberta Children’s Hospital. His research focuses on applying technologies including non-invasive brain stimulation and neuroimaging to measure and modulate the response of the developing brain to early injury to generate new therapies. He is a clinician scientist and CIHR Foundation Grant Recipient. Dr. Kirton directs the Calgary Pediatric Stroke Program, Alberta Perinatal Stroke Project, ACH Pediatric Non-Invasive Brain Stimulation Laboratory and University of Calgary Noninvasive Neurostimulation Network (N3).
Dr. Ariane Marelli is the Director of Cardiovascular Research and the Associate Director for Academic Affairs for Cardiology at the McGill University Health Centre. She completed her training in adult cardiology and a fellowship in pediatric cardiology at McGill University. She lectures internationally on topics related to adults with congenital heart disease. Her research interest involves the epidemiology of congenital heart disease. She is a founding member of the International Society for Adults with Congenital Cardiac Disease. She is currently the Director of the MAUDE Unit at McGill University and she joins the CHILD-BRIGHT team to contribute her expertise in transition of care from pediatric to adult health care services.
Prior to joining the School of Child and Youth Care, Aryeh was Assistant Deputy Minister (ADM) in the Ontario Ministry of Children and Youth Services with policy responsibility for children’s mental health, autism and child welfare. Prior to joining MCYS, Aryeh was ADM of the Instruction and Leadership Development Division, and the Business and Finance Division, Ontario Ministry of Education. He also worked at the Halton Board of Education, as the Head of Guidance and Special Education, and as a Curriculum Coordinator. Aryeh began his career at the Scarborough Board of Education teaching Mathematics and English.
Dr. McGrath a clinical psychologist, is Vice President Research, Innovation and Knowledge Translation for the IWK Health Centre and the Nova Scotia Health Authority and Canada Research Chair and Professor of Psychology, Pediatrics, and Psychiatry at Dalhousie University. He has a distinguished record as a researcher on innovative ways of delivering health care to families and pain in children. His research has spanned a wide range of studies on measurement and psychosocial interventions in many different types of pain in infants, children and youth. He is a co-editor of the textbook, Pain in Neonates and Infants. His research has been recognized by being made an Officer of the Order of Canada and numerous other awards.
Dr. Miller is Head of the Division of Neurology and Centre for Brain & Mental Health at the Hospital for Sick Children, and Professor in the Department of Paediatrics, University of Toronto. He holds the Bloorview Children’s Hospital Foundation Chair in Paediatric Neuroscience. Collaborating with a multidisciplinary team, his research program focuses on better understanding brain injury and development in the newborn. He and his team use advanced brain imaging and detailed long-term follow-up to understand the impact of critical illness and intensive care therapies on the developing brain. He has contributed to our understanding of brain abnormalities caused directly by preterm birth, perinatal asphyxia or indirectly by congenital heart disease.
Amy Houtrow, MD, PhD, MPH is Associate Professor of Physical Medicine & Rehabilitation and Pediatrics at the University of Pittsburgh. She is Vice Chair of Pediatric Rehabilitation Medicine and Quality. She completed her MD from Michigan State University, trained in Pediatrics and PM&R at Cincinnati Children’s Hospital, and received her MPH from the University of Michigan and her PhD in Medical Sociology from the University of California San Francisco. Her research focuses on improving health services for children with disabilities. Clinically, she cares for children with complex disabilities and directs the Rehabilitation Institute at the Children’s Hospital of Pittsburgh.
Dr. Jennifer Crosbie is a Clinical Psychologist and Health Clinician Scientist within the Department of Psychiatry and the Clinical Lead of the Mental Health Access Program at SickKids. Dr. Crosbie is an Associate Scientist within the SickKids Research Institute, Neuroscience and Mental Health Program, and Assistant Professor at the University of Toronto. Dr. Crosbie’s research and clinical work is focused on understanding the neurobiological determinants of childhood neuropsychiatric disorders, with a particular focus on attention deficit hyperactivity disorder (ADHD). He external funding includes CIHR, the Province of Ontario Neurodevelopmental Disorders (POND) Network via the Ontario Brain Institute (OBI), and the CHILD BRIGHT Network SPOR.
Dr. Kathryn Birnie is a CIHR-funded postdoctoral fellow at the University of Toronto and the Hospital for Sick Children under the supervision of Dr. Jennifer Stinson. Dr. Birnie obtained her PhD in Clinical Psychology from Dalhousie University in 2016. She completed her predoctoral clinical internship in pediatric health psychology, and child and adolescent mental health, at the IWK Health Centre in Halifax, NS. Dr. Birnie’s research and clinical expertise are primarily with children and youth experiencing pain and illness, and their families. She is currently co-leading a CIHR-funded national patient engagement project in the area of pediatric chronic pain.
Dr. Lach is an Associate Professor in the School of Social Work, and an Associate Member of the Departments of Pediatrics and Neurology/Neurosurgery in the Faculty of Medicine, McGill University. Her program of research focusses on the quality of life of children with neurodisabilities and their caregiver. She has a special interest in health-related quality of life and parenting of children with neurodevelopmental disorders. She is part of a recently funded Strategic Patient-Oriented Research (SPOR) Team entitled CHILDBRIGHT, as co-lead of one of three themes that is evaluating five intervention/prevention approaches to supporting children with neurodisabilities and their families.
Kate Robson works at Sunnybrook Health Sciences Centre NICU as a Parent Coordinator and is one of the Director of the Canadian Premature Babies Foundation in Toronto, Canada. Kate Robson’s first daughter was born in 2005 at 25 weeks, weighing 500 grams. Her 2nd daughter was a slightly more robust 32-weeker born in 2007. She has spent time as a patient and as a parent in 4 different hospitals and 3 different NICUs. She now works in one of those NICUs as a Parent Coordinator, offering support to families and helping the unit deliver family centered care. Her background in Adult Education and Community Mediation, when combined with her personal experiences, helps her bring families and staff together as collaborators.
Jack, a McGill University and Second City Alumna, is a professionally trained improviser, writer and television host with more than 20 years experience in the communications field. Jack specializes in building connection. She trains corporate leaders, staff, clinicians and individuals on how to authentically communicate with their teams, clients and audiences. She volunteers as a peer support facilitator for the Canadian Premature Babies Foundation (CPBF) and works with the #itdoesnthavetohurt pain management education initiative for kids. As a parent/patient advocate, she combines her lived experience with her communications expertise to integrate teams, bring awareness and enhance health care delivery.
Dr. Cohen is a general paediatrician at the Hospital for Sick Children and an Assistant Professor in the Department of Paediatrics at the University of Toronto with cross-appointments in the Institute of Health Policy, Management and Evaluation and the Faculty of Nursing. Dr. Eyal Cohen completed his medical training at the University of Toronto in 2000. He trained in pediatrics at the Hospital for Sick Children and Children's Hospital at Westmead in Sydney, Australia and completed an MSc in health research methodology at McMaster University in 2008. His research interests focus on models of care coordination for children with complex and chronic health needs, improving the quality of inpatient care, and barriers to conducting research in vulnerable populations.
Dr. Deborah Hirtz retired from a long career as a Program Director for Clinical Trials and Studies at the National Institute of Neurological Disorders and Stroke, NIH. She received her undergraduate degree at the University of Chicago and medical degree at Hahnemann Medical College. She is board-certified in Pediatric and Neurology, and trained at the Children’s Hospital Medical Centre and George Washington University in Washington, DC. At the NINDs, she managed a large portfolio of research involving clinical trials, seizure disorders in children, autism and other developmental disorders, cerebral palsy, and neurodevelopmental disorders of infants and children in lower and middle income countries. She has been a clinical consultant in Child Neurology for the Montgomery County Health Department, the National Children’s Center, and the Children’s National Medical Centre of DC. She is currently a Professor of Neuroscience and Pediatrics at the University of Vermont.
Dana Florence is the mother of triplets Taylor, Cole and Brody, who are the inspiration behind Three to Be. Before becoming a mother, Dana was a primary school teacher with a passion for helping children to reach their full potential. When her own three children were diagnosed with Cerebral Palsy, Dana’s unwavering tenacity and optimism for the discovery of treatments for neurological disorders moved her to become an advocate both for her children and all other children living with neurological disorders in Canada and around the world. Dana is passionate about developing the organization to advance research, education and therapies in this area. Dana founded Three to Be with the intention to make a difference in the lives of many children.
Crystal Chin was born in Taiwan where she was diagnosed with a neuromotor condition at eight months of age. She immigrated to Canada in her late childhood where she lived in the Greater Toronto Area and received treatment and monitoring at the Hospital for Sick Children as well as Holland Bloorview Kids Rehabilitation hospital. Through her many interactions with academic and medical sectors, she became engaged in her community, particularly around health and education issues. At Holland Bloorview Kids Rehabilitation hospital, she previously held the role of co-chair, and public relations on the Youth Advisory Council. She is also a member of the Patient Family Advisory Council and a Foundation Ambassador.
Jerry Koh is Director of Systems Innovation at MaRS Discovery District. He is a strategist and foresight specialist in public policy and healthcare administration. His systems change projects include innovation procurement, demand-led youth employment, urban mobility, public sector innovation.
Mathias Castaldo, a student at Ryerson University ready to graduate with a major in Psychology. Mathias has been a former client of Holland Bloorview. His experiences of living with a “disability” and his education at Ryerson has led him to work with Community Living York South as a camp counselor for their summer programs. In addition, he is currently a volunteer at Holland Bloorview where he is co-chair of the Youth Advisory Council as well as a Youth leader and Youth mentor. He has also advised and participated on research projects at Holland Bloorview. Furthermore, he participated in Holland Bloorview’s anti-stigma campaign and will be the new Teen Lounge Host at Holland Bloorview. Mathias hopes to one day be a Special Education teacher working with other youths with “disabilities” and inspiring them to achieve their goals.
Day 2 Speakers
Donna Thomson is an author and speaker on issues relating to family caregiving, disability and aging. She is a patient and family advisor on health research and policy. Donna teaches family caregivers how to advocate for care and she blogs regularly for Troy Media and THE CAREGIVERS' LIVING ROOM www.donnathomson.com. Donna sits on the board of Kids Brain Health Network and advises on multiple committees and projects of CHILD-BRIGHT.
Dr. Darcy Fehlings is Head of the Division of Developmental Paediatrics and is a Professor in the Department of Paediatrics, at the University of Toronto. She is the inaugural holder of the Bloorview Children’s Hospital Foundation Chair in Developmental Paediatrics. Dr. Fehlings is a Senior Clinician Scientist in the Bloorview Research Institute. Her research focuses on the innovation and evaluation of interventions for children with cerebral palsy. She is the lead investigator of an Ontario Brain Institute integrated neuroscience network focused on children with cerebral palsy (CP-NET) and leads the CP Discovery Project in the Canadian Kids Brain Health Networks of Centres of Excellence. She is a past President of the American Academy for Cerebral Palsy and Developmental Medicine.
Dr. Christine Chambers is the Canada Research Chair (Tier 1) in Children’s Pain and Professor in the Departments of Pediatrics and Psychology & Neuroscience at Dalhousie University. She is based in the Centre for Pediatric Pain Research at the IWK Health Centre. She has published over 100 peer-reviewed papers on the role of developmental, psychological, and social influences on children’s pain, with a current research focus on the role of families in pediatric pain and social media for knowledge mobilization. Dr. Chambers is passionate about patient and family engagement, as evidenced in the award-winning CIHR-funded #ItDoesntHaveToHurt social media initiative.
Dr. Mabbott is a Senior Scientist and Associate Chief, Academic and Professional Practice in the Research Institute of the Hospital for Sick Children, and Associate Professor of Psychology at the University of Toronto evaluating brain/behaviour relations in normal and impaired neurodevelopment using cognitive data and quantitative MRI methods. He is currently examining neurocognitive outcomes following diagnosis and treatment with radiation for brain tumors and demonstrating that cranial radiation is associated with intellectual decline. He recently began exciting new work to find ways to foster brain repair following radiation injury in children treated for brain tumors, including using physical exercise and drugs that stimulate the growth of new brain cells.
Dr. Evdokia Anagnostou, MD, is a child neurologist and senior clinician scientist at Holland Bloorview Kids Rehabilitation Hospital. Dr. Anagnostou is also the Assistant Director of Holland Bloorview’s Research Institute; co-leading the Autism Research Centre (ARC). Dr. Anagnostou holds a Canada Research Chair in translational therapeutics in Autism Spectrum Disorder (ASD) and the Dr. Stuart D. Sims Chair in Autism at Holland Bloorview. Dr. Anagnostou’s research focuses on translating genomic and systems biology findings into novel treatments for ASD. She is also an associate professor in the department of pediatrics at the University of Toronto, which is fully affiliated with Holland Bloorview.
Franco A. Carnevale is a nurse, psychologist and clinical ethicist. He completed his undergraduate nursing degree, and three master's degrees in nursing, education, and bioethics, as well as a doctorate in counseling psychology at McGill University. He also completed a master’s degree in philosophy at Université de Sherbrooke and a second doctorate in moral philosophy at Université Laval. Dr. Carnevale's primary research interests include a wide range of concerns in pediatric ethics. Dr. Carnevale is the founder and principal investigator for VOICE (i.e., Views On Interdisciplinary Childhood Ethics); a McGill-based international initiative to advance knowledge and practices relating to ethical concerns in childhood.
Freda Miller is a Professor and Senior Scientist at the Hospital for Sick Children and the University of Toronto. She obtained her undergraduate degree at the University of Saskatchewan and her Ph.D. at the University of Calgary, and held faculty positions at the University of Alberta and the Montreal Neurological Institute at McGill prior to coming to Toronto in 2002. Her research has focused upon growth factor signaling in the developing nervous system, with a particular focus on how neurotrophic factors regulate the genesis, survival and growth of neurons. In particular, her laboratory has defined an interplay between the TrkA and p75 neurotrophin receptors that regulates the biology of developing neurons, has defined key roles for the p53 family in the brain, has identified and characterized the first dermal stem cell, and has defined how growth factors encountered in the embryonic environment regulate the self-renewal and differentiation of developing neural precursors. In recognition of this work, she has won numerous awards, and is an HHMI Senior International Research Scholar, and an elected fellow of the AAAS and of the Royal Society of Canada. In addition, this work has led to her role as a founder in two different biotechnology companies. Dr. Miller also has significant experience in administrative roles. She was previously a Councillor and Secretary for the Society for Neuroscience, President of the Canadian Association for Neuroscience, President of the International Society for Developmental Neuroscience, and is currently the Treasurer of the Society for Neuroscience.
Jennifer Johannesen is a parent, patient advocate and bioethicist. Her son Owen had multiple severe disabilities all his life; when he passed away in 2010 at the age of 12, Jennifer captured her reflections of their health care experiences in her book, No Ordinary Boy. Through her writing and lectures, Jennifer encourages caregivers, clinicians and administrators to consider their health care experiences and encounters through a critical, reflexive lens. Jennifer also supports organizations and research teams to improve the ways in which they seek and include patient and family input. She completed an MSc in Bioethics in 2016.
Rachel is a mom to an eleven-year-old boy born with multiple disabilities. Making hospitals and clinics her second home garnered an interest in getting involved in healthcare and research collaboration. She was the first to partner with the Rare Disease Foundation in Alberta to create a Parent 2 Parent Resource Network for families at Alberta Children’s Hospital. She recently took on a position with the steering committee for the Canadian Family Advisory Network. Rachel also works with CanChild as Parent Engagement Facilitator for their program “Parents Participating in Research” seeking to create more partnerships with families and needed research.
Louise Kinross is special projects manager at Holland Bloorview Kids Rehabilitation Hospital and editor of BLOOM, the hospital’s blog and e-letter on parenting kids with disabilities. BLOOM promotes the idea that every child blooms in his or her own unique way. Last year the blog had readers in 181 countries. It’s been picked up by the New York Times, Huffington Post and AOL Online. Louise has a 23-year-old son with a rare genetic disorder.
Ann Douglas is a passionate writer, talented speaker and parenting expert. She is also the mother of four children who have each struggled with different mental health challenges. Inspired by her role as a parent and the journey of being a mental health patient herself, Ann has made it her mission to motivate others in need. An accomplished Canadian author, Ann has published numerous books about the challenges of parenting a child with mental health and neurological challenges. She hosts regular online conversations about parenting and mental health through Morneau Shepell Children’s Support Solutions, the International Bipolar Foundation, and Partners for Mental Health. Ann also speaks at parenting and mental health seminars across the country.
Dr. Latal, is the Co-Director of the Child Development Center at the University Children’s Hospital Zurich. She leads a large research group and is dedicated to teaching and faculty development. In her research, she investigates the developmental outcome of newborns and children at risk for neurodevelopmental disorders. This includes children born very prematurely, children with hypoxic-ischemic encephalopathy (“perinatal asphyxia”) and children with severe congenital heart disease. Dr. Latal’s main research goals are to characterize the prevalence and severity of neurodevelopmental impairments in these children, to identify the potential risk factors for impairments and to study the mechanisms involved in the etiology of brain injury.
Derek van der Kooy
Derek van der Kooy received a MSc in Psychology at the University of British Columbia, and a PhD in Anatomy, at Erasmus University in the Netherlands, and at the University of Toronto. He served as Professor in the Department of Anatomy and Cell Biology at the University of Toronto from 1991 until 2002, and then became a Professor in the Department of Molecular Genetics. His lab is the Neurobiology Research Group. The Van Der Kooy lab works on various stem cell biology and developmental biology research projects. They continue to investigate the nature of stem cells, embryonic and adult, the concept of immortal cells, and the differentiation of embryonic stem cells, capable of forming any tissue in the body, to neural stem cells. Derek received a Distinguished Scientist of the Canadian Institutes of Health Research award.
Dolly is a Clinical and Research Ethicist at Holland Bloorview Kids Rehabilitation Hospital and the Bloorview Research Institute. She is particularly interested in pediatric rehabilitation issues that arise in both clinical care and research with children and youth with chronic illness and disabilities. Dolly has over ten years’ experience on pediatric research ethics boards, both at acute and rehabilitation hospitals. Dolly has a long-standing interest in Clinical Bioethics and completed both her undergraduate and Master’s degrees in Bioethics at the University of Toronto. Prior to working in the field of Ethics, Dolly was a Youth Facilitator in the cross-organizational LIFEspan Service at Holland Bloorview and Toronto Rehab, UHN.
Dr. Racine is Director of the Neuroethics research unit and Full IRCM Research Professor. He is also a member of the Departments of Medicine and Social and Preventive Medicine (Bioethics Programs; Université de Montréal), an Adjunct Professor in the Department of Neurology and Neurosurgery (McGill University), and an Affiliate Member of the Biomedical Ethics Unit (McGill University). Dr. Racine’s research is designed to improve the ethical aspects of quality of care, research practices and public communications in the domain of clinical and basic neuroscience. Various approaches and research methods, such as qualitative interviews, content analysis and media studies, are used to develop ethical approaches in health care and research.
Lorraine Sunstrum-Mann, Chief Executive Officer of Grandview Children's Centre has been with the organization since 2011. Lorraine began her career as an Early ChildhoodEducator working with children with special needs. This work fuelled her interest in a career in nursing. Lorraine has held senior leadership roles at Lakeridge Health (Durham Region) and St. Michael's Hospital (Toronto), including Chief Nursing Executive. Lorraine holds a diploma in Early Childhood Education for the Developmentally Handicapped (Humber College), a diploma in Nursing (Durham College), a Bachelor of Arts - Health Studies (York University) and a Master of Business Administration (Heriot-Watt University). Lorraine completed the Public Sector Leadership Institute at Rotman University of Toronto in 2013. Between 2000 and 2006, Lorraine served on the Durham College and University of Ontario Institute of Technology Governing Boards including as Chair from 2004-2006. Lorraine currently sits as a Director on the Board of Sloane's House. Lorraine is a member of the Durham Child and Youth Planning Network, The Best Start Network (Durham Region), The Ontario Association of Childrens Rehabilitation Services and The Provincial Council of Maternal Child Health (Ontario). She is Chair of the Canadian Network of Child and Youth Rehabilitation (Canada), a committee of The Canadian Association of Paediatric Health Centres (Canada), and is an ex officio member of the Board of Trustees for Grandview Children's Centre.
Dr. McInnes is the Director of the Lady Davis Institute of the Jewish General Hospital, Alva Chair in Human Genetics, Canada Research Chair in Neurogenetics, and Professor of Human Genetics and of Biochemistry at McGill University. Until 2009, he was a University Professor, the highest academic rank, at the University of Toronto. Previously, he was the Head of the Program in Developmental Biology at the Research Institute of the Hospital for Sick Children, an International Research Scholar of the Howard Hughes Medical Institute and, from 2000-2010, the inaugural Scientific Director of the Institute of Genetics of the Canadian Institutes of Health Research. He has made important contributions to the understanding of the molecular basis of retinal and eye development, the identification of genes and processes associated with inherited retinal degeneration, and to knowledge of synaptic accessory proteins that modulate the activity of ion channels in the nervous system. He is one of three coauthors of the 5th, 6th, 7th and 8th editions of the textbook Thompson and Thompson’s Genetics in Medicine, for which they received the 2015 American Society of Human Genetics (ASHG) Award for Excellence in Human Genetics Education. In 2010, Dr. McInnes was the President of the ASHG. Amongst other honours, Dr. McInnes is a Fellow of the Royal Society of Canada and the Canadian Academy of Health Sciences. He was appointed to the Order of Ontario in 2008, and made a member of the Order of Canada in 2009.
Rebecca is a PhD student investigating the effects of cranial irradiation on neural precursor cells in a mouse model. She will be determining if metformin treatment can rescue irradiation induced deficits observed in these cell populations and in cognitive functioning. She is also studying sex-dependent effects of both cranial irradiation and metformin treatment on neural precursor cells and cognition.
Day 3 Speakers
Dr. Goldowitz received his PhD in Psychobiology at the University of California. His subsequent postdoctoral work at Harvard Children’s Hospital in Boston, the Karolinska Institute in Stockholm, and the University of Utah School of Medicine in Salt Lake City was in the development of the nervous system. Using approaches that were relatively novel to the study of the brain he pioneered approaches to ascertain the function of genes in brain and behaviour. He currently holds a Tier 1 Canada Research Chair. He maintains strong NIH- , CIHR- and foundation-funded research programs in the genetics of brain development and function. Dr. Goldowitz led a successful application to be one of the federally funded NCEs, NeuroDevNet [recently rebranded as Kids Brain Health (KBHN) Network], currently in its second funding cycle with Goldowitz as the Scientific Director. More recently, Goldowitz was a part of a successful application to CIHR under Canada’s Strategies for Patient-Oriented Research (SPOR) with a mandate to establish a chronic disease network focused neurodevelopmental disabilities. CHILD-BRIGHT (Child Health Innovations Limiting Disability-Brain Research Improving Growth Health Trajectories) is a national network that aims to improve life outcomes for children with brain-based developmental disabilities and their families. Within this Network, Goldowitz leads the Training Core which is tasked with developing the training program for multiple stakeholder groups (patients/families, health care providers, researchers, and policy makers).
Dr. James Reynolds is a Professor in the Department of Biomedical and Molecular Sciences, and the Centre for Neuroscience Studies, at Queen's University. His research interests over the past 20 years have centred around studies on the effects of alcohol on the developing brain, with a focus on understanding the mechanisms of brain injury, and the resulting behavioural and cognitive deficits, that are induced by prenatal exposure to alcohol. Dr. Reynolds has been funded for interdisciplinary basic and clinical investigations into the cellular mechanisms and neurobehavioural consequences of Fetal Alcohol Spectrum Disorder (FASD), and is one of the project leaders in Kids Brain Health Network, a national Network of Centres of Excellence in developmental neuroscience. In this role, Dr. Reynolds co-ordinates multi-centre, cross-Canada projects encompassing basic science and clinical studies in FASD that involve genetics, brain imaging, neurobehavioural assessments and intervention studies.
Jennifer Zwicker is passionate about social policy and healthcare reform. She completed a BSc (Honours) in Physiology and Developmental Biology and a PhD in Neurophysiology at the University of Alberta. During graduate school, she was engaged in fostering innovation in informed policy development and science communication through interdisciplinary collaboration. She advocated for the important role graduates of science programs can play outside of the academic community. She currently works in health policy as a Research Associate in Calgary. Her focus is on innovation and health economics where she collaborates with stakeholders to develop health policy to foster effective and financially stable health care systems.
Dr. Weksberg is a Professor of Pediatrics and Molecular Genetics at The Hospital for Sick Children and the University of Toronto. She was Head, Division of Clinical and Metabolic Genetics, The Hospital for Sick Children for 11 years. Dr. Weksberg is actively involved in many University of Toronto and national initiatives in genetics and epigenetics. Her research interfaces between clinical genetics assessments on patients and molecular genetic approaches to understanding imprinting and epigenetic lesions in the development of genetic syndromes and sporadic cancers. She is currently funded by CIHR, CFI, and most recently by NIH as a co-investigator for a program to study induced pluripotent stem (iPS) cells derived from children with autism or psychosis and genomic copy number variations which will formally explore the attitudes of families to the development of iPS lines for research purposes.
Laura Williams is the parent of an 11-year old son with a rare genetic condition, GRIN1. This diagnosis was made in December 2015 through whole exome sequencing after a 9-year search. Since the diagnosis, Laura has been connected with families across the globe who are partnering to support research to help their children. Laura is also the Director of Patient Engagement at the University Health Network (UHN). In her role, Laura provides leadership for Patient and Family Education, Patient Engagement and Partnerships, Patient Relations, Interpretation and Translation Services, Patient Experience Measurement and the Patient Portal. Over the past decade, Laura has been a champion of patient engagement in pediatric, adult and government settings, promoting the importance of embedding patient and family caregiver voices into all health care decisions. This includes policy development, organizational planning and at the point-of-care.
Sylvain Moreno, PhD, Director of the Digital Health Hub and Associate Professor at the School of Interactive Arts and Technology. Dr. Moreno is a specialist in neuroscientific technologies related to digital media, rehabilitation and brain fitness solutions. Dr. Moreno has been a member of the New York Academy of Science since 2006. He is the Head of Innovation for the NeuroDevnet NCE and part of the AGE-WELL NCE’s innovation team. He has been the recipient of many awards from national and international organizations such as the Early Researcher Award from The Ontario Ministry of Economic Development and Innovation (2014). His work has received widespread press in various media outlets including the The New York Times and Forbes. He has authored several scientific publications and patents with real-world impacts in clinical and educational environments.
Dr. Chakraborty is a physician certified by the Royal College in Medical Biochemistry and Pediatrics, with a subspecialty in Biochemical Genetics. He joined CHEO in 2003 as a clinician seeing patients with Inborn Errors of Metabolism (IEM). In 2006, he led the transition of Ontario’s newborn screening program to Ottawa leading to the establishment of Newborn Screening Ontario (NSO) at CHEO. In 2008, he was instrumental in the founding of the Better Outcomes Registry and Network (BORN Ontario) at CHEO as a prescribed registry in Ontario. Finally, he is a Principal Investigator for the Canadian Inherited Metabolic Disease Research Network which recently was awarded a $1.5M CIHR Emerging Teams grant for rare disease research.
Michael H. Thaut received his PhD in music with a cognate minor in movement science in 1983 and his masters in music 1980, both from Michigan State University. Since 2016 he is Professor of Music with cross appointments in Neuroscience and Rehabilitation Sciences at the University of Toronto where he directs the Music and Health Research Collaboratory (MaHRC) and the Masters/PhD programs in Music and Health Sciences. His research career has been focused on the neural and psychophysical basis of music and rhythm perception and clinical application of music and rhythm to motor, speech/language, and cognitive training in neurologic disorders. He is the founder of the evidence-based treatment system of Neurologic Music Therapy whose certificate training has been endorsed by the World Federation of Neurorehabilitation. He is President of the International Society for Clinical Neuromusicology, Vice President of the International Society for Music and Medicine, a Management Board Member of the World Federation of Neurorehabilitation, and an elected Overseas Fellow of the Royal Society of Medicine (U.K.).
Dr. Kobor is a Professor of Medical Genetics at UBC and Tier 1 Canada Research Chair in Social Epigenetics. A Senior Scientist at the Centre for Molecular Medicine and Therapeutics. He serves as Theme Lead for Healthy Starts at BC Children’s Hospital, an Investigator with the Kids Brain Health Network NCE, and a Senior Fellow in the Child and Brain Development Program of the Canadian Institute for Advanced Research. He completed his PhD in Medical Genetics at the University of Toronto before undertaking postdoctoral training as a Human Frontier Science Program Fellow at the University of California. Most recently Dr. Kobor’s laboratory has begun investigating epigenetic variation in humans, with a particular focus on the effects of social environment on lifelong health and aging.
Dr. Osborne received her doctoral degree from The University of London, England and completed post-doctoral training in human genetics at the Hospital for Sick Children. She is currently a Professor in Medicine and Molecular Genetics, with a laboratory in the Medical Sciences Building. The major focus of Dr. Osborne's research is chromosome rearrangements of human chromosome 7q11.23, with the aim of understanding the molecular basis of the resulting neurodevelopmental disorders. Her lab is at the forefront of research into the deletion disorder Williams syndrome, as well as its reciprocal duplication disorder. Osborne and her team are currently using both human participants and animal models to probe the molecular and cellular bases of cognitive and behavioural aspects of these syndromes.
Dr. Krista Hyde is an Associate Professor in the Dept. of Psychology, University of Montrealand Adjunct Professor, Dept. of Psychiatry, Faculty of Medicine, McGill University. She is also a Faculty Member at the International Laboratory for Brain Music and Sound Research, Center for Research on Brain Language and Music and the 'Autism Research Training Program' (ART). Dr. Hyde's research focuses on auditory brain, behavioral and cognitive development in typically-developing children and adults, as well as in individuals with autism spectrum disorders. She also studies brain plasticity as a function of specialized training such as music and dance. In her laboratory, Dr. Hyde uses a multi-disciplinary research approach combining MRI brain imaging techniques of structure and function with behavioral methods. She is also interested in correlating brain and behavioral measures with genetic profiles in neurodevelopmental disorders. Dr. Hyde's research has important implications in terms of fundamental science and clinical applications to better understand brain and behavioral interactions in typical and atypical development.
Dr. Chaya Kulkarni is currently the Director of Infant Mental Health Promotion (IMHP) at The Hospital for Sick Children in Toronto. Infant Mental Health Promotion is a community based coalition of individuals and professional agencies dedicated to promoting optimal mental health outcomes for infants in the first three years of life. Dr. Kulkarni provides leadership to research, professional education and public awareness activities at IMHP. In her role with IMHP, Chaya is currently leading advocacy and training initiatives in areas such as child welfare including family courts, and community based programs supporting families in their neighborhoods. She leads IMHP in the development and implementation of curricula and materials to support professionals working with families of young children.
Cheryl Cytrynbaum has been a genetic counsellor in the Division of Clinical and Metabolic Genetics at The Hospital for Sick Children since 1992. Prior to joining SickKids she worked as a genetic counsellor at McMaster University Medical Centre in Hamilton. Cheryl received her master of science in medical genetics from the University of Wisconsin-Madison in 1990 and was certified in Genetic Counselling by the American Board of Medical Genetics in 1993. Cheryl is a Lecturer in the Department of Medical Genetics and Microbiology at the University of Toronto as well as a clinical supervisor to students in the M.Sc Program in Genetic Counselling. She holds a Project Director appointment in The Hospital for Sick Children Research Institute based on her involvement in clinical research and supervision of graduate students. Cheryl has a special interest in 22q11 Deletion Syndrome, overgrowth syndromes and bioethics.