As CHILD-BRIGHT continues to evolve, we are increasingly working to ensure many voices are represented and heard on our Citizen Engagement Council (CEC), the body overseeing the network’s citizen engagement activities.
With that in mind, we are thrilled to welcome three new members to the CEC, each bringing their own lived experiences and expertise to the table.
Chaired by Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement, the CEC provides guidance to researchers on how to engage patient-partners, including parents of children and youth with brain-based developmental disabilities, in their work, and how to share information with them. In addition, the council advises the network on the development and implementation of evidence-informed practices, policies, services, and programs to improve patient outcomes, access to care and quality, efficiency, and effectiveness of health care.
“I am delighted to welcome new and returning members to the Citizen Engagement Council,” said Sharon.
“Our council brings together individuals with a range of experiences and perspectives around the same goal of making research more patient-oriented. I am excited about the change we will bring through our shared commitment.”
The new members commenced their term in September 2021. Get to know them a little better below.
Symbia Barnaby
Symbia Barnaby is an Indigenous woman of Haida and Mi’kmaq descent living in northern British Columbia. Her traditional Haida name is Guu Gang Jung and her spirit name is Warrior Woman. She is a single mother of six children, five of whom have special needs. She is trained as a practical nurse, a birth and postpartum doula, and a Reiki Level 3 Practitioner. She is also a storyteller, a filmmaker, and a Wisdom Translator.
She has consulted, developed, and run many workshops on anti-racism, disability, inclusive education, intersectionality, and health equity through an Indigenous lens.
Symbia also volunteers as the Co-Lead of the Health Advocacy Team with Moms Against Racism Canada, a national non-profit organization.
Samadhi Mora Severino
As the parent of two children, one who has severe disabilities, Samadhi Mora Severino has been a parent-partner and Parent Advisory Committee member with the Strongest Families Neurodevelopmental Program since its beginnings. She is also an emerging equity researcher in the areas of health and disability services and policy.
A community advocate working with families of children with a neurodevelopmental disability and other disabilities, Samadhi is dedicated to making relevant and important changes in disability services and policies through equity, diversity, and inclusion.
Samadhi’s experience includes research with children with complex disabilities, adults with disabilities, and Indigenous people with disabilities living in Ontario. As a Ph.D. student at York University, she uses mixed methods and participatory action research in relation to medical assistance in dying (MAiD), home care access, and palliative care access for people with disabilities in Canada.
Samadhi has served as a member of the technical working group of Ministry of Health and Long-Term Care in Ontario to develop a provincial program for self-directed funding for children with medical complexity. She was previously a community board member for the research ethics board at Public Health Ontario.
Phil Snarr
Phil Snarr is from Winnipeg, Manitoba. He and his wife Marilyn have two children, their daughter Julia (aged seven) and their son Jack (aged five).
Jack lives with cystic fibrosis (CF), and Phil and his family are actively involved in the CF community, both in Winnipeg and across Canada. In their down time, Phil and his family enjoy playing board games, going fishing, and swimming.
Phil holds a Science degree in Microbiology and Chemistry from the University of Manitoba. Today, Phil works at the Medical School at the University of Manitoba, where his interests include pediatric research, patient-oriented research, and knowledge translation.
“I think that citizen engagement is incredibly important in both the clinical health setting and in health research,” Phil says. “I am excited to join the Citizen Engagement Council and to share my experiences with the group.”
Welcoming Carrie Costello as Vice-Chairperson of the CEC
Carrie Costello (right) with daughter Emma
Alongside our new members, we are also delighted to welcome Carrie Costello as Vice-Chairperson of the CEC.
Based in Winnipeg, Carrie is a mom to three daughters, one of whom has global developmental delays and a seizure disorder with Todd’s paresis. As CHILD-BRIGHT's Parent Peer Mentor, Carrie has already made invaluable contributions to the work of the council and the entire network. You can read more about Carrie and her work as a parent-partner in this blog post.