BRI Symposium

Click on this link to register for this year's BRI Symposium

The deadline for in-person registration: Oct. 31, 2024

The deadline for virtual registration: Nov. 5, 2024

November 7, 2024

9:00 am – 4:30 pm

Holland Bloorview Kids Rehabilitation Hospital Conference Centre (Hybrid)

Innovating for Global Impact: 20 years of transforming childhood-onset disability research with families and communities

Friday, November 8, 2024

9:00 am – 4:30 pm

Holland Bloorview Kids Rehabilitation Hospital Conference Centre (Hybrid)

Innovating for Global Impact: 20 years of transforming childhood-onset disability research with families and communities

Dr. Robert Bortolussi, FRCP(C), professor emeritus, Dalhousie University and co-founder of MicroResearch Centre, IWK Health Centre

MicroResearch: Community Health Research and Opportunities to Improve Disability Care in Africa

This session will explore the MicroResearch Community Health Research program. MicroResearch ensures small research projects will have a real impact on health. This talk will specifically highlight potential opportunities to improve disability care in Africa by using local health care professionals to find sustainable solutions to local health problems using community focused research.

Biography

Dr. Bortolussi is a former vice president of research of the IWK Health Centre and is professor emeritus of paediatrics at Dalhousie University.  He edited “The Handbook for Clinician Scientists” which is used in many universities in Canada and as part of the MicroResearch curriculum. He is a fellow of Canadian Academy of Health Sciences and president of the global health ection of the Canadian Paediatric Society. He is presently the editor of Clinical and Investigative Medicine (CIM).

Dr. Sobia Khan, Director of Implementation, The Center for Implementation

Reflections on equity and justice in implementation science and practice

This talk will provide an introduction to implementation science and practice, focusing on the importance of equity and justice throughout the implementation process, in the development of relationships, and in the systems, structures and ideologies that underpin implementation work. Dr. Khan will provide an overview of the equity iceberg to dive deeper into these topics, and will introduce key reflection questions and considerations to embed equity and justice into all aspects of implementation research and practice. 

Biography

Dr. Sobia Khan is an award-winning global expert on how to practically implement complex interventions in complex systems. Dr. Khan emphasizes pragmatic and equity-driven approaches, with a particular focus on the need for relationship building, advocacy, and collective action to create change at all levels of the system. Dr. Khan has worked on over 100 implementation research and practice projects in multiple fields and various levels of the system. In addition, Dr. Khan is internationally recognized for transforming the landscape of implementation training by distilling science into practice. She has developed world-renowned courses on how to practically implement in organizations, communities, and systems — the only training of its kind. She holds an MPH from the University of Waterloo and a PhD from the Institute for Health Policy, Management and Evaluation at the University of Toronto.

This keynote is generously sponsored by Autism Science Foundation Canada.

Dr. Tim Benke, Ponzio Family Endowed Chair in Neurology Research; medical director, Rett Clinic and research director, Neuroscience Institute, Children’s Hospital Colorado; professor of pediatrics, neurology, pharmacology and otolaryngology, University of Colorado School of Medicine.

Leveraging Local and International Resources in Rare Neurodevelopmental Disorders Toward New Therapies

This talk will describe how specific resources supported the path towards approval of new therapies in rare neurodevelopmental disorders. These resources included local and international patient support groups and clinical resource infrastructures. The focus is on the challenges of uniting patient-centric priorities with local infrastructure and regulatory (FDA) requirements.

Biography

Tim Benke is Ponzio Family Chair in neurology research and professor of pediatrics, pharmacology, neurology and otolaryngology at University of Colorado School of Medicine.  He joined the University of Colorado, School of Medicine and Children’s Hospital Colorado (CHCO) in 2002 where he is research director of the Neuroscience Institute.  He initiated the multi-disciplinary Rett/CDKL5/FOXG1 Clinic in 2011 at CHCO (recognized as a center of excellence), where he is the medical director.  Dr. Benke was site principal investigator for the NIH-funded Natural History Study and collaborated in clinical trials and outcome measure development in RTT and CDKL5.  He is leading the male RTT project funded by IRSF and RMRA. His translational lab collaboratively studies the impact of early-life seizures and CDKL5 on synaptic plasticity.

This talk is generously sponsored by Acadia Pharmaceuticals Canada

Thursday, November 7

Dr. Jessica Brian, Senior Clinician Scientist; Psychologist, Bloorview Research Institute

It was twenty years ago today: The research journey from earliest detection to early intervention for toddlers with emerging autism and related social communication needs

This presentation will take attendees along a research journey from investigating the very earliest signs of emerging autism in babies and toddlers, through the development of a caregiver-mediated intervention and its implementation in Canada and beyond. The presentation will highlight the developmental trajectory of this longitudinal program of research, concluding with lessons learned and next steps.

Biography

Dr. Jessica Brian a clinical psychologist and senior clinician-scientist at Holland Bloorview, where she co-leads the Autism Research Centre at the Bloorview Research Institute. Dr. Brian is also associate professor, University of Toronto, Department of Paediatrics, with affiliations at Hospital for Sick Children and the Ontario Institute for Studies in Education (OISE/UofT). She specializes in neurodevelopmental disabilities with a particular interest in early identification and intervention in autism spectrum disorder (ASD). Dr. Brian has spent the past 25 years collaborating in a pan-Canadian longitudinal research program that explores the development of children at elevated likelihood for ASD (Infant Siblings Study), who are followed from infancy into adolescence. Informed by this early identification work, Dr. Brian co-developed the Social ABCs, a caregiver-mediated intervention for toddlers with emerging autism or related challenges. She has a long history of teaching graduate students, clinical trainees, and community providers in topics related to early detection, assessment, diagnosis, intervention, and supports for autistic children and youth and their families.
 

Dr. Tom Chau, distinguished senior scientist, Bloorview Research Institute

20/20 hindsight: fabrics, fractality & forces – where we should have gone

Reflecting upon the last 20 years of research in pediatric rehabilitation intelligent systems (PRISM Lab) at Holland Bloorview, this talk will present a central thread that perhaps has been stringing together, inconspicuously, many seemingly disparate scientific investigations, from conductive cover stitches to covert speech brain-computer interfaces. Key advances in pediatric access technologies as well as relatively obscure contributions will be highlighted, illustrating how they have collectively and synergistically provided the scaffolds for our present research efforts.

Biography

Tom Chau is a distinguished senior scientist at Bloorview Research Institute and a full professor in the Institute of Biomedical Engineering at the University of Toronto. His research investigates novel access pathways for non-speaking children and youth with severe physical impairments. He has published many journal articles relating to pediatric rehabilitation engineering and has developed numerous assistive technologies aimed at enabling communication and control for children with disabilities. Dr. Chau's contributions to childhood disability research have been recognized nationally and internationally.

Friday, November 8

Dr. Darcy Fehlings, senior clinician scientist and developmental pediatrician
Brenda Agnew, parent and family advocate

Dystonia in Cerebral Palsy: Driving Global Change in Care over Two Decades

Working together Brenda Agnew (parent stakeholder) and Darcy Fehlings (clinician scientist) will discuss why dystonia is important to recognize and manage for individuals with cerebral palsy.  The presenters will take the audience on a 20-year journey from clinicians and families missing or not knowing their child had dystonia to driving change in the clinical and research arena by the development of the Hypertonia Assessment Tool and leading the development of an international clinical practice guideline and AACPDM (American Academic in Cerebral Palsy and Developmental Medicine) ‘Dystonia in CP” Care Pathway on pharmacologic and neurosurgical management.

Biography

Dr. Darcy Fehlings

Dr. Darcy Fehlings is a developmental pediatrician and professor in the Department of Paediatrics at the University of Toronto.  She is a senior clinician scientist in the Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital. Her clinical and research work focuses on the innovation and evaluation of interventions for children with cerebral palsy including hypertonia interventions, early detection, constraint therapy, dystonia and pain management.  She has led the AACPDM Care Pathways for ‘Dystonia in CP’. She has held positions as the inaugural head of the U of T Division of Developmental Paediatrics (2006-2022) and president of the American Academy of Cerebral Palsy and Developmental Medicine (2015).

Brenda Agnew, parent and family advocate and marketing manager, Gluckstein Lawyers

Brenda Agnew is the proud mother of two sons, Chase and Maclain. Her younger son Maclain is a former 29-week-old twin-to-twin transfusion survivor. He has quadriplegic dyskinetic cerebral palsy and profound hearing loss as a result of a condition known as Kernicterus, a brain injury that results from untreated jaundice. Since Maclain was diagnosed, Agnew has been a tireless in advocating for better systems and programs for children with neurodiverse needs. There is much personal empowerment in having the ability to provide substantial input on how policies, programs, and priorities are created and communicated, and how we incorporate and engage families. She is grateful daily to have been afforded continuous opportunities to create, foster, and grow relationships with professionals, fellow parents and caregivers.

Agnew is an active member of volunteer organizations such as CP-Net, CHILD-BRIGHT Citizen Engagement Committee, PONDA, the AACPDM Community Council and is a director on the board of directors for Easter Seals Ontario.

In addition to her role with Gluckstein Lawyers, Agnew is also a school board trustee with the HCDSB in her second term, where she is also the chair of the Special Education Advisory Committee.
 

Dr. Jan Andrysek, senior scientist, Bloorview Research Institute and associate professor, University of Toronto, Institute of Biomedical Engineering

Expanding the world of possibility

This talk covers Dr. Jan Andrysek’s journey within the BRI over the last 20+ years, and how the institute has grown and expanded, and my research program alongside it.

Biography

Dr. Jan Andrysek is a senior scientist at BRI and an associate professor at the University of Toronto's Institute of Biomedical Engineering. His research focuses on developing assistive technologies, with a focus on prosthetic and orthotic limb design and fabrication, wearables for rehab, and tools to measure mobility and physical activity. He also studies the global impact of prosthetic rehabilitation.

This session will highlight the notable accomplishments of Holland Bloorview’s Research Family Engagement Committee and the work underway to boldly re-imagine the role of the committee in advancing research for all children with disabilities. This session will also feature a lived experience talk and musical performance.

Dr. Tim Ross, Scientist, Assistant Professor, Bloorview Research Institute, Scientist Co-Chair, Research Family Engagement Committee

Dr. Tim Ross is a scientist in the Bloorview Research Institute, assistant professor in the Department of Geography and Planning and the Rehabilitation Sciences Institute at the University of Toronto, and he is the scientist co-chair of the Research Family Engagement Committee. Dr. Ross leads the Engagement & Planning for Inclusive Communities Lab, which explores experiences of disability and ways to advance more accessible, inclusive, and diverse communities. Four of his key research areas are: (1) education access, (2) transportation and mobility, (3) inclusive play, and (4) institutional ableism.

Questions about ableism and its normalcy within the planning and design of our built environments, services, and systems are central to Dr. Ross’ research.

Suzanne Jorisch, Family Leader Co-Chair, Research Family Engagement Committee

Suzanne Jorisch is a financial executive who has over 20 years of senior management experience. She is exceptionally motivated to seek, identify, develop, and implement organizational improvements, with a focus on quality, profit opportunities, and cost savings. Her areas of expertise include accounting and administrative management, human resources and payroll management and financial planning, budgeting, reporting, and analytics. Jorisch has been an extremely active part of our Holland Bloorview Family Leadership Program since 2013 serving on numerous committees including the Hospital Board of Directors, Business & Audit Committee, Research Teaching and Learning Committee, Quality Committee, Family Advisory Committee, and the Research Family Engagement Committee, among others.

Adrian Anantawan, Violinist, Associate Professor, Berklee College of Music

Adrian Anantawan is an acclaimed violinist and associate professor at Berklee College of Music. He holds degrees from the Curtis Institute of Music, Yale University and Harvard Graduate School of Education where he studied with musical greats like Itzhak Perlman and Pinchas Zukerman. Adrian has performed at prestigious venues, including the White House, the United Nations and the Olympic Games. In Canada, he has been a soloist with major orchestras such as those in Toronto, Vancouver and Montreal.

A passionate advocate for accessibility in the arts, Adrian co-founded the Virtual Chamber Music Initiative and the Music Inclusion Program, which help children with disabilities engage with music. Among his many honours are a Juno nomination, induction into the Terry Fox Hall of Fame, and the Queen’s Diamond Jubilee Medal for his contributions to both music and disability advocacy.

As a former out-patient client at Holland Bloorview, the orthotics & prosthetics team built a customized prosthetic so that he could play the violin when he was a child. Inspired to give back to the hospital, he was introduced to cutting-edge technology developed by the PRISM Lab, Virtual Music Instrument, a device that translates movements into music. Together with a team of doctors, musicians, music therapists and educators, he explored the device’s potential for kids with disabilities to express themselves through music.

Proudly sponsored by the Ward Family, the Pursuit Award recognizes PhD students for their outstanding achievements in childhood disability research.

Patricia Kipkemoi

From Genes to Behaviour: Diagnosis, genetic and phenotypic architecture and environmental influences of neurodevelopmental disabilities

In many parts of Africa, the diagnosis of neurodevelopmental disabilities (NDDs) such as autism and intellectual disability is challenging, in part, due to a lack of culturally appropriate and adequately standardised screening and diagnostic tools. The validation of screening and diagnostic tools is crucial as we move towards better care for affected families. Many recent studies have tried to understand the genetic causes of these conditions, mostly in high-income countries including North American and Western European populations but rarely in the context of African populations. Understanding how common and rare genetic variations relate to neurodevelopmental traits not only helps bridge this gap but also paves the way for the development of targeted interventions and management strategies for affected children. This talk will explore several key areas: the importance of validating autism screening and diagnostic tools for phenotypic characterization, the genetic, phenotypic architecture associated with NDDs in Kenya, and the prenatal, perinatal, and postnatal factors linked to autism in children from Kilifi and Mombasa counties in Kenya, as well as Cape Town, South Africa. To close out the talk, Kipkemoi will contextualize our findings within current global discourse on NDDs and highlight areas for future research that can build on the insights gained from this work.

Biography

Patricia Kipkemoi is a final-year PhD candidate with the KEMRI-Wellcome Trust Research Programme, Kilifi, Kenya and an incoming post-doctoral researcher with Aga Khan University, Nairobi, Kenya. Her research focuses on neurodevelopmental disorders (NDDs) in low-resource settings, specifically in African populations. Her work has involved validating screening tools, understanding environmental and genetic risk factors, and contributing to the NeuroDev Project, which explores the genetic and phenotypic architecture of NDDs in Kenya and South Africa. Kipkemoi was nominated to be a research fellow in a program called Global Initiative for Neuropsychiatric Genetics Education in Research (GINGER), which trains young African researchers in neuropsychiatric genetics analysis. Through the GINGER program, facilitated by Harvard TH Chan and the Broad Institute, she received training in epidemiology, biostatistics, and statistical genetics, graduating from the program in May 2024. In 2022, she was nominated to be an autism spectrum disorder representative for the Psychiatric Genetics Consortium (PGC)- Africa working group. This role involves forming a database of autism-related studies on the African continent and diaspora.

Dr. Madison Giles

We’re not some cute little naïve innocent beings”: Exploring the sexuality of youth with physical disabilities

Dr. Madison Giles will share the stories of youth with physical disabilities, focusing on their sexual identities, needs, hopes, dreams, and desires. These stories come from her PhD research where she used an arts-based methodology to highlight unique forms of knowledge and employed an Intersectional framework to center youth with intersecting identities, such as Black, Indigenous, and youth of colour, as well as LGBTQ+ youth. Through the youth’s stories, Giles saw how society limits their sexuality by largely viewing them as vulnerable and not fully sexual beings. The youth had to navigate and resist this desexualization and find creative ways to assert their value and desirability as sexual beings.

Biography

Dr. Madison Giles is a project manager at the Sex Information and Education Council of Canada. She holds a PhD in public health sciences from the University of Toronto’s Dalla Lana School of Public Health and a postdoctoral fellowship from Unity Health Toronto. Gile's research explores the complexity of human sexuality using critical qualitative and arts-based methodologies. In addition to producing scientific publications and presentations, she is committed to co-creating community-facing and youth-focused products, such as art galleries and digital storybooks. Giles’s research always involves people with lived experience, aiming to examine how power operates over others while simultaneously acknowledging the power we hold with others.

Dr. Marlee Vandewouw

Characterizing diversity in brain function and structure to advance personalized health

Despite having distinct diagnostic labels, neurodevelopmental conditions such as autism, attention-deficit/hyperactivity disorder, and obsessive-compulsive disorder vary significantly in their brain and behaviour within each condition, and also overlap across conditions. This highlights the need for personalized health approaches, where care is tailored to each individual’s unique biology, rather than their diagnostic label. In this talk, Dr. Marlee Vandewouw will present work from her thesis which used state-of-the-art approaches to deepen our understanding of neurobiological variability and improve our ability to predict adverse outcomes in neurodiverse children and youth. This work paves the way for more precise and effective approaches to care, ultimately improving outcomes for neurodiverse children.

Biography

Dr. Marlee Vandewouw has over eight years of experience in neuroimaging research, where her work has primarily focused on understanding the neurobiology of neurodevelopmental conditions. She recently obtained her doctoral degree from the Institute of Biomedical Engineering at the University of Toronto under the supervision of Dr. Azadeh Kushki. Here, her work focused on characterizing neurobiological diversity and improving our ability to predict adverse outcomes in neurodivergent children and youth. Ultimately, her work has taken an initial step towards personalized health, where care is tailored to an individual’s biology, strengths, and needs.

Each year, the Bloorview Research Institute welcomes over 100 graduate and doctoral students, otherwise known as trainees, from universities across Canada and beyond to study alongside some of the world’s leading scientists and gain first-hand knowledge on the latest advancements in childhood disability research. The BRI symposium is one of several events where these trainees can showcase their research to a broad audience.

This year’s presenters are:

Towards developing a digital workflow for transradial prostheses
Presenter: Calvin Ngan
Authors: Calvin Ngan and Jan Andrysek

Gamified Assessment: Extracting and characterizing reach performance in children with cerebral palsy using data collected from Bootle Blast, a movement tracking video game
Presenter:  Sorsha Asady
Authors: Sorsha Asady, Elaine Biddiss, Ajmal Khan, Soowan Choi

Applying an implementation science framework to pediatric autism assessment: Facilitators and barriers in Ontario
Presenter: Zahra Wakif
Authors: Zahra Wakif, Lisa Kanigsberg, Genevieve Ferguson, Melanie Penner; Project ECHO AuDIO Team

Development and Validation of a Textile-Based Prosthetic Socket Pressure Sensing System
Presenter:  Thierry Dugas
Authors: Thierry Dugas and Jan Andrysek

Analysis to Examine Phenotypic and Physiological Correlates to Irritability in Autism
Presenter: Sara Alatrash
Authors: Sara Alatrash, Tithi Paul, Brendan Andrade, Suneeta Monga, Jessica Brian, Evdokia   Anagnostou, Melanie Penner, Atena Roshan Fekr, Azadeh Kushki

Exoskeleton-assisted physiotherapy: feasibility and outcomes associated with usage in school and outpatient settings for children with cerebral palsy
Presenter: Stefanie Bradley
Authors: Stefanie Bradley, Virginia Wright, Anne Kawamura, Tom Chau

Engaging Clinicians and Youth in the Development of a Novel Multidomain Assessment and Rehabilitation Tool for Concussion
Presenter: Josh Shore, Danielle DuPlessis, Brian Xiao
Authors: Josh Shore, Danielle DuPlessis, Brian Xiao, Andrew Lovell, Pavreet Gill, Emily Lam, Fanny Hotze, Ajmal Khan, Stephanie McFarland, Andrea Hickling, Kylie Mallory, Michael Hutchinson, F. Virginia Wright, Nick Reed, Sarah Munce, Elaine Biddiss, Shannon Scratch.

Home-based transcranial direct current stimulation to promote self-regulation in children with autism spectrum disorder (ASD)
Presenter: Norna Abbo
Authors: Norna Abbo, Trina Mitchell, Evdokia Anagnostou, Brendan Andrade, Deryk Beal

At the Bloorview Research Institute, scientists, researchers and trainees are co-creating transformative, equity-driven research with clients and families to enable healthy futures for children and youth living with developmental differences and disabilities, and their families in Canada and worldwide.

Please stop by and have a chat with our presenters to learn more about their incredible research in the Coriat Atrium