CHILD-BRIGHT’s Engagement Council: Partners with Lived and Living Experience (EC: PWLE) is composed of parents and caregivers of children and youth with brain-based developmental disabilities, as well as other knowledge users. It provides guidance to CHILD-BRIGHT research teams on embedding partners with lived and living experience (PWLEs) in all network projects and activities, to ensure authentic engagement.
EC: PWLE members draw on their lived and living experience and knowledge to fulfill this mandate, which involves providing input on research protocols, recruitment strategies, research intervention procedures, communication plans, and knowledge translation activities and outputs, such as co-authorship of research papers, as well as sharing their perspectives in network reports and blog posts.
In addition to offering this service to CHILD-BRIGHT-funded researchers, the EC: PWLE members are now offering a consultation service to Canadian researchers working on childhood disability research projects not funded by CHILD-BRIGHT via the CHILD-BRIGHT Lived and Living Experience Consultation Service.
Why engage our EC: PWLE members? They can:
Ensure your research question is relevant to children and youth with brain-based developmental disabilities and their families
Help develop consent forms, questionnaires, and other materials in a way that makes them easier to understand, makes sense to children, youth, and families, and is considerate of their needs
Help design the intervention in a way that is feasible and acceptable to children and youth with brain-based developmental disabilities and to health care providers, and therefore easier to apply in the real world
Help ensure the outcomes of greatest importance to children and youth with brain-based developmental disabilities are the ones measured
And more! Learn how to request a consultation today.
Our members’ consultation capacity
Depending on the project in question, one or many EC: PWLE members may be available to offer input on your research project:
Sharon McCarry
CHILD-BRIGHT Director of Citizen Engagement
Sharon is a long-time CHILD-BRIGHT parent-partner and Parent Advisory Committee member with the Strongest Families Neurodevelopmental Program as well as a community advocate for families living with autism spectrum disorder (ASD) and other neurodevelopmental disabilities. She has a 19-year-old son with autism.
Symon Hay
Director, Westcoast Connection Travel Camp
Symon was born with congenitally corrected Transposition of the Great Arteries. Along with his main clinical diagnosis he also has Wolff-Parkinson-White syndrome, a patent foramen ovale, severe tricuspid regurgitation, mild mitral valve regurgitation and severe subpulmonary stenosis. He is currently the Director of a travel camp for teenagers and has worked with children for 25 years.
Brenda Agnew
Volunteer Director, PAL, Three to Be
Brenda is the mother of two boys, Chase and Maclain. Maclain has severe cerebral palsy and profound hearing loss as a result of a condition known as kernicterus. Brenda is also an active member of volunteer organizations such as CP-Net, the Burlington Accessibility Advisory Committee and the PONDA network. Brenda is a client liaison for Gluckstein Lawyers and a school board trustee at the Halton Catholic District School Board.
Carrie Costello
CHILD-BRIGHT Parent Peer Mentor | Vice-Chair, CHILD-BRIGHT Citizen Engagement Council
Carrie is CHILD-BRIGHT’s Parent Mentor and Vice-Chair of the CEC. Carrie is the mother of three daughters. Her daughter, Alejandra, has a profound intellectual disability and a seizure disorder with Todd’s paresis.
Logan Wong
Co-chair, CHILD-BRIGHT National Youth Advisory Panel
Logan is a CHILD-BRIGHT youth member and co-chair of the National Youth Advisory Panel. He is a Registered Social Worker and has cerebral palsy, autism spectrum disorder, and multiple anxiety disorders.
Samadhi Mora Severino
Parent-partner and Parent Advisory Committee Member with Strongest Families ND | Ph.D. Student at York University
Samadhi is a parent-partner and Parent Advisory Committee member with the Strongest Families Neurodevelopmental Program. She is also an emerging equity researcher in the areas of health and disability services and policy. Samadhi is the parent of two children, one who has severe disabilities.
Phil Snarr
Parent-partner | Medical School at the University of Manitoba
Phil works at the Medical School at the University of Manitoba, where his interests include pediatric research, patient-oriented research, and knowledge translation. He has two children, daughter Julia (aged 7) and son Jack (aged 5), who lives with cystic fibrosis.
Michelle Wan
Parent-partner | Solutions for Kids in Pain Patient-partner
Michelle is a CEC member, a member of the SickKids Hospital Family Advisory Network, a patient-partner with Solutions for Kids in Pain and a member of the Transition to Adult Care Hub with Children’s Healthcare Canada. She is mother of two children aged 12 and 14. Her first-born daughter received life-saving surgery at birth and her youngest son has ADHD.
Gunjan Seth
Parent-partner | Autism Speaks Family partner
Gunjan is a CEC member and a Family Leader at Holland Bloorview Kids Rehabilitation Hospital. She is also a parent advisor with ECHO Ontario Autism, a family partner with Autism Speaks, Autism Care Network and PFAC member with Ontario Health. She is the mother of a son with autism.
Elaine Weng
Parent-partner
Elaine Weng is a CEC member and mother of three children aged 6, 4 and 1. Elaine’s son was formally diagnosed with autism spectrum disorder in 2022.
Karena Crumpler
Parent-partner | Director, Cerebral Palsy Association of BC
Karena is a CEC member, a Director for the Cerebral Palsy Association of BC and parent advocate on the BC Cerebral Palsy Advisory Committee with BC Children’s Hospital and Sunny Hill Health Centre. She is also a reflexology therapist. She has two sons; her oldest lives with cerebral palsy.
Chenxin Jin
Parent-partner
Chenxin Jin is a CEC member and holds a PhD in materials engineering from Dalhousie University. She has identical twin girls Laura and Layla. Layla has level IV spastic quadriplegia cerebral palsy while her sister Laura is typically developed.
Suzanne Deliscar
Parent-partner
Suzanne Deliscar is a CEC member, a French and Spanish legal translator and an authentication & legalization agent. She previously practiced law in English, Spanish and French in the areas of wills & estates, family law, and civil litigation for almost 17 years. Suzanne has been involved in a number of hospital and university studies as a research participant and has spent time involved with online groups that support parents of children with special needs and other caregivers.
Michelle Vautour-Shales
Parent-partner | Human resources consultant
Michelle is a CEC member, advocate for inclusion and accessibility and a human resources consultant.
Saba Jahangir
Parent-partner
Saba is a CEC member who has a Master’s in software engineering and is a freelancer. Saba has a neurodiverse child.
Tinu Akinwande
CHILD-BRIGHT Equity, Diversity, Inclusion - Decolonization & Indigenization Coordinator
Tinu is CHILD-BRIGHT’s Equity, Diversity Inclusion, Decolonization, and Indigenization Coordinator.
Annette Majnemer
CHILD-BRIGHT Nominated Principal Investigator and Scientific Co-Director
Annette is a non-voting member of the CEC.
Heather Muir
CHILD-BRIGHT Lived Experience Lead
Heather holds a Masters from the University of Hull, England and the Università Di Bologna, Italy in Interdisciplinary Gender Studies. As part of her role as Lived Experience Lead, she supports the Citizen Engagement Council’s activities and the CHILD-BRIGHT Lived Experience Consultation Service.