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Graphic of 18th annual BRI Symposium

The 18th Annual BRI Symposium

Advancing horizons: personalized, equitable care and global partnerships through the power of childhood disability research

The Bloorview Research Institute is pleased to host the 18th Annual BRI Symposium on Thursday, November 16th, 2023.

Held in-person this year and live-streamed over Zoom, Canada’s largest hospital-based research conference on pediatric disability and developmental differences will showcase how BRI’s scientists, researchers and trainees are advancing this field through their ground-breaking research, discovering innovation, family engagement and action.

The symposium is generously sponsored by the Ontario Brain Institute.

Bronze Partner

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Attending In-Person 

If you are planning to attend the BRI research symposium in-person, please register here.

Attending Virtually

If you are planning to attend the BRI research symposium virtually, please register here.

Event Agenda

Download event agenda

Program Booklet

Download the BRI Symposium Program Booklet

Tharsiny Markandu - morning co-host and family leader

 

I am a mother of a 17 ½ year old daughter diagnosed with autism. I strongly believe that each child will develop to his/her best potential if provided with holistic interventions to develop, meaningful opportunities to participate in the community, loving relationships, and effective agency. As parents, we need to practice self-care while also empowering ourselves to be active partners in the care of our children.  We need to collaborate with professionals to have individualized care, as well as advocate for a meaningful inclusion in the society.

I am an electrical engineer with a fascination for the human mind and spirit. Presently, I am completing my Master’s in Psychology and Neuroscience of Mental Health. My involvement with health care started at the Children’s Hospital of Eastern Ontario. As a member of the Family Forum, I represented the families at the emergency department.  Following my move to Sri Lanka, I co-founded Reach Beyond – Autism and Child Development Center, with three guiding pillars: holistic intervention for individuals with disabilities, parental empowerment, and advocacy & awareness.

After returning to Canada, I joined Holland Bloorview’s Research Family Engagement Committee, and have since then joined the BRI Symposium Planning Committee (2023) and the “Strategy Committee - Care that is transformed”. I am truly amazed by the degree of service-user involvement at Holland Bloorview, especially by how much the family engagement is valued at all levels.

I feel privileged to be a Family Leader and am grateful for the opportunity to serve. With my lived experience as a parent of an autistic child and international experience in disability care, I appreciate the importance of “Personalized, equitable care and global partnerships through the power of childhood disability research”.

Ivona Novak, afternoon co-host and family leader

 

I am a dedicated mother to an 8-year-old who has bravely battled cancer and endured a spinal cord injury as a result. This challenging journey has steered me into the world of advocacy, where I am deeply committed to improving the lives of children and families facing similar struggles.

My advocacy began at Holland Bloorview, where I co-chaired the Family Advisory Committee, sit on the Quality Committee of the Board, and now serve on the Bioethics committee. I've also had the privilege of co-facilitating the Social Work & Disability Practice course at the University of Toronto. Beyond this, I contribute to the Community Association for Riders with Disability (CARD) as a board member, hold an Executive position with the Patient & Family Centered Care (PFCC) team, and actively participate in the Special Education Advisory Committee (SEAC) for TCDSB. Currently, I am enrolled in the Family in Research (FER) course through CanChild, an initiative that reflects my passion for combining research with family-centered care.

In addition to my advocacy work, I am a Development Director at EA, where I channel my enthusiasm for accessible gaming into meaningful projects. I firmly believe in the potential of gaming to provide inclusive and engaging experiences for all.

I am excited to co-host the BRI Symposium. I believe together, we can build a more inclusive, compassionate, and resilient future for our youngest heroes.

Mickey Milner International Professorship Lecture

 

Why we need global research to meet the needs of local communities

Prof Petrus J de Vries MBChB, FRCPsych, PhD

Struengmann Professor of Child & Adolescent Psychiatry, Division of Child & Adolescent Psychiatry, University of Cape Town, South Africa and Founding Director, Centre for Autism Research in Africa (CARA)

 

About 95% of children with developmental disabilities live in low- and middle-income countries (LMICs) that are culturally, linguistically and socio-politically highly diverse. Concerningly, less than 5% of research is conducted in LMICs. This raises questions about the relevance of existing research to parts of the world, especially LMICs, where it is most urgently needed. In this presentation, we will discuss the importance of building global communities of research to reduce gaps both in knowledge and research readiness, reflect on why we need to connect research with practice to ensure a global impact, and, perhaps paradoxically, consider how global research can help to meet local needs. We will use examples from research on autism in Africa and global rare diseases.

Biography

Petrus de Vries is the Struengmann Professor of Child & Adolescent Psychiatry and Founding Director of the Centre for Autism Research in Africa (CARA) at the University of Cape Town.

He trained in Medicine at Stellenbosch University in South Africa before moving to the UK where he completed his clinical training in Psychiatry and Child & Adolescent Psychiatry, and a PhD in Developmental Neuroscience at the University of Cambridge. He returned to South Africa in 2012.

Since his return to Africa, his research has focused on global autism, neurodevelopmental and child & adolescent mental health and on implementation science in low- and middle-income settings. He has worked closely with the World Health Organization (WHO) child & adolescent psychiatry team on various projects related to autism and developmental disabilities. He was a participant in the 2022 Lancet Commission on autism. Apart from his interest in autism, he has a longstanding clinical research programme in Tuberous Sclerosis Complex (TSC) and its associated neuropsychiatric disorders (TAND). He has a particular passion for global research capacity-building in autism, neurodevelopmental disabilities and child & adolescent mental health.

Petrus previously was Chairman of the Society for the Study of Behavioural Phenotypes (SSBP), Chair of the African Division of the Royal College of Psychiatrists, Treasurer of the International Association of Child & Adolescent Psychiatrists and Allied Professions (IACAPAP) and President of the South African Association of Child & Adolescent Psychiatrists and Allied Professions (SA-ACAPAP). He is the current President of INSAR (International Society for Autism Research).

IDEAA Keynote

 

 

Rethinking EDIA (Equity, Diversity, Inclusion, Accessibility) in 2023

 

Gaynor Watson-Creed (she/her), MSc, MD, CCFP, FRCPC, DSc (hc)

Associate Dean, Serving and Engaging Society

Assistant Professor, Departments of Community Health and Epidemiology and Continuing Professional Development and Medical Education

Research Scholar, Health Law Institute

Dalhousie University Faculty of Medicine

Dr. Gaynor Watson-Creed is the Associate Dean of Serving and Engaging Society at Dalhousie University Faculty of Medicine and an assistant professor in the Departments of Community Health and Epidemiology and Continuing Professional Development and Medical Education.

Her talk, Rethinking EDIA in 2023, will invite participants to be reminded of the ways in which the practice and and profession of medicine has been complicit in upholding forms of oppression, using racism as the primary example. Her talk will also introduce the concept of anti-oppressive practice, including the concepts of identity, intersectionality, and power. Finally, Dr. Watson-Creed will ask delegates to reflect on the biases we are left with and how we might react with fragility when they are exposed.

Biography

Dr. Gaynor Watson-Creed is the Associate Dean of Serving and Engaging Society for Dalhousie University’s Faculty of Medicine, and an Assistant Professor in the Department of Community Health and Epidemiology. She
is a public health specialist physician with 18 years experience, having served as the former Medical Officer of Health for the Halifax area and Deputy Chief Medical Officer of Health for Nova Scotia. Dr. Watson-Creed has an MD from Dalhousie University, an MSc from the University of Guelph, a BSc from the University of Prince Edward Island, and honorary doctorates from Acadia University and the University of Prince Edward Island. She also sits as chair or member of several national population health councils and boards, and is a passionate advocate for high-quality public health services in Canada.

Quick Hit Research Presentations

Quick Hit Research Presentations

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, a committee chose the top seven ‘quick hit’-style research presentations from 20 submissions. These students will present their compelling research in three minutes as a research pitch. Audience members, pay attention! You’ll have a chance to test your memory with a fun pop quiz!

  1. Evaluating the reliability of virtually obtained Upper Limb Motor Assessments for children with Cerebral Palsy
    Presenter: Atty Yazdy
    Authors: Atty Yazdy, Aimee Chin-A-Young, Sarah Morris, Leona Noble, Carlie Thornber, Victor Tran, Elaine Biddiss, F. Virginia Wright, Daniela Chan Viquez
     
  2. Community provider perspectives on an autism learning health network: a qualitative study
    Presenter: Josie Kearney
    Authors: Josie Kearney, Catherine Bosyj, Victoria Rombos, Melanie Penner
     
  3. Towards user-centric brain-computer interface design: Unsupervised learning and Markov chain-based methods to understand user capabilities
    Presenter:  Nicolas Ivanov
    Authors: Nicolas Ivanov, Aaron Lio, and Tom Chau
  1.  Machine Learning for Holistic, Long-Term Rehabilitation Monitoring
    Presenter: Gabriel Ng
    Authors: Gabriel Ng, Aliaa Gouda, and Jan Andrysek
     
  2. Barriers and Facilitators to the Social ABCs caregiver -mediated intervention for toddlers with emerging autism spectrum disorder
    Presenter: Erin Dowds 
    Authors: Erin Dowds and Jessica Brian
     
  3. Exploring predictors of participation from preschool to school aged children with cerebral palsy
    Presenter: Daniela Testani
    Authors: Daniela Testani, Gillian King, Sarah Munce, Heather Shearer, and Darcy Fehlings

     
  4. A Preliminary Investigation of E-I balance as a Potential Marker of Adaptive Functioning in ASD
    Presenter: Azadeh Aghamohammadi Sereshki
    Authors: Azadeh Aghamohammadi-Sereshki, Marlee M. Vandewouw, Lucia Capano, Julia Frei, Rob Nicolson, Janys Lim, Evdokia Anagnostou and Azadeh Kushki
Research Poster Presentations
 
Poster # Research Poster Title Presenter(s) Authors 
1Barriers and facilitators to obtaining accessible housing among children, youth and young adults with disabilities and their families: A scoping reviewSally Lindsay, Kristina Fuentes, Yiyan LiLindsay S, Ragunathan S, Fuentes K, Li Y
2Understanding the benefits and challenges of outpatient virtual care during the COVID-19 pandemic in a Canadian pediatric  rehabilitation hospitalSally LindsayRagunathan S, Kingsnorth S, Zhou L, Kakonge L, Cermak C, Hickling A, Wright V
3Factors influencing dataset-specific developmental changes of brain structure and function in neurodivergent childrenMarlee VandewouwMarlee M. Vandewouw, Yifan (Julia) Ye, Jennifer Crosbie, Russell J. Schachar, Alana Iaboni, Stelios Georgiades, Robert Nicolson, Elizabeth Kelley, Muhammad Ayub, Jessica Jones, Paul D. Arnold, Margot J. Taylor, Jason P. Lerch, Evdokia Anagnostou, Azadeh Kushki
4Design and development of a diagnostic system to enhance trans-radial prosthetic fabricationKansas MacKayKansas Mackay, Calvin C. Ngan, Harry Sivasambu, Jan Andrysek
5Exploring the experiences of ableism among Asian children and youth with disabilities and their families: A systematic review of qualitative studiesYiyan Li, Shaelyn HsuYiyan Li, Sharmigaa Ragunathan, Kristina Fuentes, Shaelynn Hsu, Sally Lindsay
6Teach-ABI: An Online Professional Development Module to Help Educators Understand and Support Students with Acquired Brain InjuryAndrea HicklingMarshall, SA., Lam, B., Hickling A., & Scratch SE.
7Tracking experience-dependent neuroplasticity following physiotherapy-assisted gait rehabilitation using the Trexo robotic walker for children with cerebral palsy Stefanie BradleyStefanie Bradley, Donald Mabbott, Virginia Wright, Tom Chau
8A Preliminary Investigation of E-I balance as a Potential Marker of Adaptive Functioning in ASDAzadeh Aghamohammadi SereshkiAzadeh Aghamohammadi-Sereshki, Marlee M. Vandewouw, Lucia Capano, Julia Frei, Rob Nicolson, Janys Lim, Evdokia Anagnostou, Azadeh Kushki
9Characterizing Diversity in the Neurobiology of autism, ADHD, OCD, and Neurotypical : A Graph Theory Approach on Structural MRI DataYounes Sadat-NejadYounes Sadat-Nejad, Marlee M. Vandewouw , R. Cardy ,J. Lerch , M. Taylor , A. Iaboni , C. Hammill , B. Syed ,J. A. Brian , E. Kelley , M. Ayub , J. Crosbie , R. Schachar ,S. Georgiades , R. Nicolson , E. Anagnostou  and A. Kushki 
10Community provider perspectives on an autism learning health network: a qualitative studyJosie KearneyJosie Kearney, Catherine Bosyj, Victoria Rombos, Melanie Penner
11Racial disparities among children and youth with ABI and their caregivers:  A systematic reviewPeiwen CaoSally Lindsay, Yiyan Li, Peiwen Cao
12Preliminary characterization of transradial prosthetic socket designVishal PendseCalvin C Ngan, Vishal Pendse, Harry Sivasambu, Elaine Ouellette, Neil Ready, and Jan Andrysek
13A Decision Tree Approach to Understanding Cognitive-Adaptive Discrepancies In Children With Neurodevelopmental ConditionsEric WanEric Wan, Azadeh Kushki
14Barriers and Facilitators to Implementation of Intensive Hand Therapies for Young Children with Cerebral Palsy in CanadaDivya VurrabindiVurrabindi D, Hilderley A, Cassidy C, Chai J, McCoy S, Reist S, Tao C, Tao S, Cambridge L, Herrero M, O’Grady K, Leverington E, Micek V, Andersen J, Kirton A, Fehlings D.
15Experiences of racial disparities and racism in health care for youth with autism spectrum disorder and their caregivers: A systematic reviewYiyan Li, Simran JonejaYiyan Li, Simran Joneja, Shaelynn Hsu, Kristina Fuentes, Sally Lindsay
16Demystifying listening: Research and knowledge translation strategies targeting an essential aspect of clinical practiceDr. Gillian King Kathleen M. Einarson, Gillian A. King, Marlaine Ramoodith, & the members of the CLEAR team
17Demystifying ‘resiliency’ and exploring how to assess and enhance the adaptive self-capacities of youth with disabilitiesMadhu Pinto Kathleen M. Einarson, Gillian A. King, De-Lawrence Lamptey, Madhu Pinto & the members of the RASC research team
18Brain Disruptions in Youth with Concussion Using the Adolescent Brain Cognitive Development Archival DatasetElena SheldrakeSheldrake, E., Wheeler, A. L., Goldstein, B. I., Reed, N., & Scratch, S. E.
19Towards user-centric brain-computer interface design: Unsupervised learning and Markov chain-based methods to understand user capabilitiesNicolas IvanovNicolas Ivanov, Aaron Lio, and Tom Chau
20Examining and Validating the Integration of Digital Technology for Ankle-Foot Orthosis RegistrationConnor MattonConnor Matton, Emily Northcote, Grace Chung, Leanne Sanders, Lou da silva, Jan Andrysek
21Thinking Beyond Fidelity Targets - Considering Stress and Self-Efficacy in Parent-Mediated InterventionsKate Bernardi & Sara Daoud Kate Bernardi, Sara Daoud, Erin Dowds, & Jessica Brian
22Exploring predictors of participation from preschool to school aged children with cerebral palsy  Daniela TestaniTestani, Daniela; King, Gillian; Munce, Sarah; Shearer, Heather; Fehlings, Darcy
23Collaborative Knowledge Mobilization: The Evidence to Care approach to creating a guide capturing Holland Bloorview’s Transitions practiceAshleigh TownleyTownley, A., Provvidenza, C., Holman, S., Oh, A., Bowman, L., and Kingsnorth, S
24Using Interactive Computer Play in Clinical Practice in Pediatric RehabilitationMarina PetrevskaMarina Petrevska, Jennifer L. Ryan, Selvi Sert, F. Virginia Wright, Elaine Biddiss
25Modulation of human locomotion dynamics using persistent rhythmic cue sequencesJenny TouSi Long (Jenny) Tou, Tom Chau
26Machine Learning for Holistic, Long-Term Rehabilitation MonitoringGabriel NgGabriel Ng, Aliaa Gouda, and Jan Andrysek
27Sentiment analysis of family engagement in research using lexicon-based method and support vector machine classifierLedycnarf HolandaLedycnarf Holanda, Insia Ali Raza, Masuma Akter, Tom Chau
28Goal-setting and concussion: A key component of a group-based intervention for youth Kylie MalloryKylie Mallory, Andrea Hickling, Andrew Lovell, Hiba Al-Hakeem, & Shannon E. Scratch
29Wellness in Action: What Do Wellness Principles Look Like in Real-World Special Olympics Practices Victoria Formusa or Dr. Amy McPhersonVictoria Formusa, Dr. Yani Hamdani, Dr. Nick Reed, Dr. Amy McPherson 
30Identifying ethnic disparities in the severity of cerebral palsyBisman MangatBisman Mangat, Lauren Switzer, Darcy Fehlings
31Validation of the Myant inertial sensor system for the continuous monitoring of gait Elise SchwarzElise Schwarz, Harry Sivasambu, Gabriel Ng, Aliaa Gouda, Mobeen Akhtar, Jan Andrysek  
32Barriers and Facilitators to the Social ABCs caregiver -mediated intervention for toddlers with emerging autism spectrum disorderErin Dowds Erin Dowds & Jessica Brian
33Evaluating the reliability of virtually obtained Upper Limb Motor Assessments for children with Cerebral PalsyAtty YazdyAtty Yazdy, Aimee Chin-A-Young, Sarah Morris, Leona Noble, Carlie Thornber, Victor Tran, Elaine Biddiss, F. Virginia Wright, Daniela Chan Viquez
34Access to autism spectrum disorder services for marginalized families in Canada: a scoping reviewSelina ChowSelina Chow, Oswin Chang, Thenugaa Rajeswaran, Milena Gojsevic, Iveta Lewis, Sharon Smile, Anne Kawamura, Rhea D’Costa
35Predictors of Depression in Autistic Youth – A Longitudinal Study using Data from the Province of Ontario Neurodevelopmental Disorders (POND) NetworkAvery LongmoreAvery Longmore, Evdokia Anagnostou, Stelios Georgiages, Jessica Jones, Beth Kelley, and Danielle Baribeau
36Household food insecurity among children and youth in Canada: Does the intersectionality of childhood disability and racial identity/ethnicity matter?Carolyn TinglinDe-Lawrence Lamptey, Carolyn Tinglin & Gillian King
37In-Ear EEG Device for Auditory Brain-Computer Interface CommunicationLaura Jean WheelerLaura Jean Wheeler, Tom Chau
38Evaluation of the Solution Focused Coaching in Pediatric Rehabilitation (SFC-peds) Strategy for Youth with Neuromuscular Conditions Katherine HullKatherine Hull, Christina Ippolito, Dayna Frydman, Amy C. McPherson, Laura McAdam
39Predictors of Irritability in Autism: Scoping reviewSara AlatrashSara Alatrash, Azadeh Kushki
40Exploring the resiliency of caregivers and their children during the COVID-19 pandemicSonya Basarke Sonya Basarke, Andrea Hickling, Brendan Lam, Amy McPherson, Shannon E. Scratch
41Predictors of mental health and behavioural crises in children and youth with neurodevelopmental disordersSophia LenzSophia Lenz, Jesiqua Rapley, Emma Canning, Azadeh Kushki, Danielle Baribeau
42The Bootle Blast program: A videogaming and home-based upper limb rehabilitation intervention for children with cerebral palsy living in Costa RicaElaine BiddissDaniela Chan-Víquez, Heilyn Fernández-Huertas, Carles Montserrat-Gonzalez, Ajmal Khan, Darcy Fehlings, Sarah Munce, F. Virginia Wright, Elaine Biddiss
43Move&Connect-Caregivers: A virtual group intervention for caregivers of youth experiencing persistent post-concussion symptomsHiba Al-HakeemHiba Al-Hakeem, Andrea Hickling, Kylie D. Mallory, Andrew Lovell, Tess Bardikoff, Christine Provvidenza, Brendan Lam, Brenda Knapp, Carlin Miller, Shannon E. Scratch
44Post-Acute Speech and Language Outcomes Following Childhood Stroke: A Case SeriesChristine MuscatChristine Muscat, Angela Morgan, Shannon Scratch, Deryk Beal
45Evaluating the Efficacy of ECHO Ontario Autism EducationMays AlhellawiMays Alhellawi,  Lisa Kanisberg, Melanie Penner
46Implementing Co-Design in User Testing to Improve Usability and Relevance of a Wearable Biofeedback (BFB) System for Gait RehabilitationKatie Currie Katie Currie, Mobeen Akhtar, Aliaa Gouda, Gabriel Ng, Harry Sivasambu, Jan Andrysek
47Home-based transcranial direct current stimulation to promote social communication and behaviour in children with autism spectrum disorder (ASD)Norna AbboNorna Abbo, Trina Mitchell, Brendan Andrade, Evdokia Anagnostou, Deryk Beal
    
Breakout session #1: Driving Change: The Transformative Impact of Knowledge Mobilization and Commercialization in Pediatric Rehabilitation

The intersection of knowledge mobilization and commercialization are critical to translating research into practice to create real impact. The scientists, commercialization and knowledge mobilization experts on this panel will share their experiences, challenges, and strategies, and discuss avenues for improvement and global growth. 

Panelists:

Aleena Walji, Commercialization Project Coordinator, Holland Bloorview’s Bloorview Research Institute

Aleena Walji is the Commercialization Project Coordinator at the Bloorview Research Institute within Holland Bloorview. Aleena works directly with scientists, external partners, vendors, and other stakeholders to progress and implement research innovations into practical, real-world applications. Her overall goal is to ensure the transformational innovations and evidence-based solutions developed by BRI researchers are accessible to those who stand to benefit the most from these technologies.

Jessica Brian, senior clinician scientist, psychologist, co-lead of the Autism Research Centre

Dr. Jessica Brian is a clinical psychologist and senior clinician-scientist at Holland Bloorview Kids Rehabilitation Hospital, where she co-leads the Autism Research Centre, and is an associate professor at University of Toronto’s Department of Paediatrics. She specializes in neurodevelopmental disabilities with a particular interest in early identification and supports in autism.

Dr. Brian has spent the last two decades collaborating in longitudinal research investigating the development of children at elevated likelihood for autism, followed from infancy into adolescence (Canadian Infant Sibling Study and Baby Siblings Research Consortium). Informed by this early identification work, Dr. Brian co-developed the Social ABCs, a parent-mediated intervention for toddlers showing early signs of autism or related challenges. She has a long history of training developmental paediatric fellows, psychology interns and community providers (paediatricians, psychologists, early childhood educators) in early detection, assessment, diagnosis and supports for autistic children and youth and their families.

Christine Provvidenza, Knowledge Translation Lead, Evidence to Care and NOvEL Lab, Bloorview Research Institute

Christine has a wide-range of expertise in research, program and product development, and experience with and a passion for knowledge translation (KT). Her work has focused on the development, dissemination and implementation of KT products while using best practices from KT and implementation science. Christine has created various KT products, addressing topics including concussion, peer support, weight-related conversations and sexuality and disability. Her work has engaged and targeted a wide array of audiences such as clients and families, healthcare providers, researchers and educators.

Jan Andrysek, Senior Scientist, Bloorview Research Institute

Dr. Jan Andrysek is a Senior Scientist in the Bloorview Research Institute of Holland Bloorview Kids Rehabilitation hospital, Canada’s largest teaching hospital focused on paediatric disabilities. He is an Associate Professor within the Institute of Biomedical Engineering, University of Toronto. His research program focuses on the development and improvement of treatments and assistive technologies for children and adults with physical impairments. He is also the co-founder and Chief Technical Officer at Legworks Inc., a social for-profit enterprise focused on improving prosthetic technologies and care for individuals with amputations worldwide. 

Moderator

Christa Studzinski, Director of Business Development and Partnerships, Ontario Brain Institute

Christa Studzinski has spent the last 12 years working at the Ontario Brain Institute, where she creates partnerships that help get evidence-based solutions into the community, where people are living with and receiving care for their brain disorders. As the Director of Business Development and Partnerships, she is engaging patient and community groups in the co-development and real-world validation of neurotechnologies; and working with multinationals to help them de-risk their investments into neurotech. In her previous role at OBI, she helped launch the Integrated Discovery Programs, which include CP-NET and POND. Prior to joining OBI, she completed post-doctoral fellowships at the University of Kentucky and the University of Toronto. While completing her PhD in Pharmacology from the University of Toronto, she also co-founded a contract research organization and participated in research that led to the FDA approval of a medical food for Alzheimer’s disease.

Breakout session #2: Data, AI, and Personalized Health: Successes, Opportunities, and Challenges

Precision health is a proactive and personalized approach to care where interventions, services, and accommodations are informed by each individual’s biology and environment. This panel will focus on the transformative potential of artificial intelligence (AI) for health applications. Panelists will share success stories and lessons learned from real-world experiences, and discuss opportunities and challenges in harnessing AI to address the needs of children with developmental differences, disabilities, and acquired injuries.

Panelists

Peter Welsh, Family Leader

Peter Welsh is a dedicated family leader at Holland Bloorview for the past several years.  As a volunteer, he has generously given his time and his family’s lived experience perspective as a member of the hospital’s Research Family Engagement Committee and ASD Pathways working group. He has been married for more than 25 years to his wife Linda and has two amazing children, Emily and Gareth, who lives with autism and has participated in research projects at Holland Bloorview. To Peter, family engagement in research helps to ensure that the work scientists do will be relevant to families like Peters, who can benefit from these new discoveries, therapies and treatments. In his spare time, he enjoys going to the gym with his son and has run a Friday night virtual drop-in for Autism Dads for over three years with participants joining from several countries.

Dr. Marc Fiume - Co-Founder and CEO, DNAstack

Dr. Marc Fiume is an entrepreneur and opinion leader in genomics data sharing. He earned his PhD. in Computer Science from the University of Toronto in 2015, and is now co-founder and CEO of a company called DNAstack.

DNAstack’s mission is to save and improve lives by unlocking the collective power of the world’s genomics and health data. To drive this mission forward DNAstack recently launched Omics AI - a software suite that enables privacy-preserving federated insights across distributed data. This software powers the Autism Sharing Initiative, a collaboration dedicated to building the world’s largest federated network of genomics and related datasets for autism.

For these and other efforts, DNAstack was recognized by the World Economic Forum as one of a hundred global Technology Pioneers in 2022, and was officially named as Company of the Year for 2023 by Life Sciences Ontario.

Dr. Fahad Razak, Internist at St Michael’s Hospital, Senior Fellow at Massey College, and Canada Research Chair in Data-Informed Health Care Improvement at the University of Toronto

Dr. Razak is an internist at St Michael’s Hospital, Senior Fellow at Massey College, and Canada Research Chair in Data-Informed Health Care Improvement at the University of Toronto. His research focuses on improving the care of hospitalized patients through application of advanced analytic methods. He co-founded GEMINI, the largest hospital research network in Canada. Dr Razak completed a degree in Engineering Science and Medical Doctorate at the University of Toronto. He was the first physician to be appointed the David Bell Fellow at Harvard University and was the prior Scientific Director of the Ontario COVID-19 Science Advisory Table.  

Dr. Anna Goldenberg, Senior Scientist at The Hospital for Sick Children; Associate Professor, UofT Department of Computer Science;Varma Family Chair in Biomedical Informatics and Artificial Intelligence (AI) at The Hospital for Sick Children (SickKids) Research Institute

Dr. Goldenberg obtained her PhD at Carnegie Mellon University in Machine Learning and did her post doctoral training at Penn Centre for Bioinformatics and then the Donnelly Centre. She is the first Varma Family Chair in Biomedical Informatics and Artificial Intelligence (AI) at The Hospital for Sick Children (SickKids) Research Institute, where she also co-leads the AI in Medicine for Kids (AIM) initiative. She is a CIFAR AI Chair and a fellow of CIFAR’s Child and Brain Development group. Additionally, she is the research theme co-lead at the Temerty Centre for Artificial Intelligence Research and Education in Medicine (T-CAIREM) where she helps foster innovation in AI in Medicine research.

The current focus of her lab is on developing machine learning methods for clinical use across diseases and conditions as well as quantifying the variability in the healthy state of individuals as well as across populations with the help of wearables.

She is Director of the AI for Healthcare Masters Program in Computer Science and LMP.  In this role, she will develop and lead world-class educational programs in Computational Medicine and Computational Biology while fostering collaborations with relevant departments, the Vector Institute for Artificial Intelligence, and T-CAIREM.

Moderator

Dr. Azadeh Kushki, Associate Chief of Data Science, Bloorview Research Institute

Dr. Azadeh Kushki is the Associate Chief of Data Science at the Bloorview Research Institute, Senior Scientist at the Holland Bloorview Kids Rehabilitation Hospital, Associate Professor at the Institute of Biomedical Engineering at the University of Toronto, and the she is the analytics lead for the Province of Ontario Neurodevelopmental Disorders (POND) Network. Dr Kushki’s research focuses on the application of data science approaches to characterize neurodevelopmental diversity, and to inform personalised health approaches for neurodivergent children.

Exhibitor Booths

Featured exhibitors:

FABLE

Presenters: Shane Kehoe, Patrick Angara

Fable is a leading accessibility platform powered by people with disabilities. Fable moves organizations from worrying about compliance to building incredible and accessible user experiences.  Digital teams work with Fable to improve accessibility for over 1 billion people with disabilities. Fable Engage connects digital teams to people with disabilities remotely and on-demand for accessibility research and testing. Fable Upskill provides custom accessibility training for digital teams to gain skills to build inclusive products. To learn more, visit https://makeitfable.com.

QUILLSOFT

Presenters: Fraser Shein, Founder and CEO, David Lester, Vice-President Sales Americas

Quillsoft Ltd., founded in 2000 in partnership with Holland Bloorview, operates in the education space as part of the Nisai Group (UK). Quillsoft and Nisai offer solutions involving both technology and online teaching to support learners with learning differences and those who are neurodiverse, and in general, anyone facing barriers to reading and writing for any reason. Nisai’s Holistic English Language Proficiency Programme (N-HELPP) brings together evidence-based practice and experience using online teaching along with Units of Sound and Quillsoft’s WordQ software to help individuals with their English communication skills. Units of Sound is a multi-sensory English language program that supports reading, writing and memory development through structured teaching tasks. WordQ is a simple-to-use tool that helps students create better quality writing with greater independence and confidence. These help students develop the skills and confidence they need to learn for life and thrive in school and in the workplace. 

TREXO

Presenters: Grace Chen, Marc Robert, Jenn Horowitz

Trexo Robotics is a pioneering company that is redefining mobility solutions for people of all ages and abilities. With a primary focus on the underserved children's market, Trexo is using state-of-the-art robotics to make walking a reality for children with disabilities. The company was founded in 2011 by Manmeet Maggu and Rahul Udasi, who were inspired to develop a device to help Manmeet's nephew, who was diagnosed with cerebral palsy. Trexo's innovative device, the Trexo Home Robotic Gait Trainer, is the first wearable robotic device designed to enable children with disabilities to experience walking in a stable and independent manner. Trexo's mission is to create a device that is trusted by physical therapists, affordable for parents, and loved by children.

BECOMING YOU: EXPLORING SEXUALITY AND DISABILITY FOR PRE-TEENS

Becoming You is a unique online resource developed by Holland Bloorview Kids Rehabilitation Hospital for preteens with disabilities and their parents/caregivers to explore questions and spark conversations around sexuality and sexual identity. Pre-teens watch and listen to the book or they can download it as a fully accessible pdf. The book was co-created by researchers at Holland Bloorview’s Bloorview Research Institute in partnership with lived experience collaborators and reviewed by a team of family leaders and clinical specialists.

This one-of-a-kind resource is part of the Disability and Sexuality Resource Hub, an online hub for young adults, parents, caregivers, educators and healthcare providers to have an open dialogue around disability and sexuality. The hub contains video impact stories, conversation guides, books, resources, research on sexuality and much more.

The development of the Disability and Sexuality Resource Hub is supported by the Social Sciences and Humanities Research Council and the Holland Bloorview Kids Rehabilitation Hospital Foundation.

Learn more: hollandbloorview.ca/sexuality

FAMILY LEADERSHIP PROGRAM

The Bloorview Research Institute (BRI) works with the Family Leadership Program to engage families in all parts of research done at the BRI. Family Leaders can use their lived experience to offer feedback on current or upcoming research projects, join a research team, or help to implement findings into care. Families can also join the Research Institute Family Engagement Committee (RFEC), which informs BRI strategy and initiatives by identifying the needs and priorities of clients and families. RFEC members include family members of Holland Bloorview clients, current or former clients, and staff in the hospital and BRI.

Self-guided tour package

Download self-guided tour package