Since the creation of our network, CHILD-BRIGHT’s Citizen Engagement (CE) Program has fostered meaningful engagement with youth and families. Its Citizen Engagement Council (CEC) is composed of youth and young adults with brain-based developmental disabilities, parents of children with brain-based developmental disabilities, and other members, including researchers and health professionals. The CEC’s role is to offer guidance to the network about embedding patient-partners in all network projects and activities, to ensure authentic engagement.
In order to continue offering this guidance in Phase 2, while assuming leadership nationally in promoting patient-oriented research in child health research, the CEC has been forming new connections and building relationships with new organizations and community groups, and individuals.
We’re now proud to introduce six new members to the CEC from across Canada. Their lived experiences, professional background, and insights as parents of children with brain-based developmental disabilities are a welcome addition at this juncture.
Meet our newest CEC members:
Elaine Weng
Elaine Weng is a mother of three wonderful children aged 6, 4 and 1. In 2015, Elaine and her husband moved to teach in a small community called Fort Resolution in the Northwest Territories. They love living in the North and all their children were born in Yellowknife. In 2021, they found out their son, now 4 years old, has a rare genetic disorder called chromosome 16p duplication, which is highly associated with autism spectrum disorder (ASD). Elaine’s son was formally diagnosed with ASD in 2022. They decided to move to Yellowknife from another small fly-in community called Whatì for him to get regular speech and occupational therapy sessions. It has been a journey learning about her son, which is why Elaine is thrilled to be a part of the CEC. As a parent with lived experience, it would mean a lot for her to make a difference for other families and children.
Elaine and her family love the outdoors. They play outside as much as they can until it either gets too cold in winter or too buggy in summer.
Saba Jahangir
Saba has a Master’s in software engineering and is a freelancer. Saba is also homeschooling her neurodiverse child. She is deeply interested in learning about new research and innovations in the health and technology field. She’s thankful to have the opportunity to assist CHILD-BRIGHT’s diverse research initiatives, which cover a broad spectrum of ages and developmental phases. She finds this prospect exhilarating as it holds the promise of benefiting and shaping the future of our offspring.
Saba’s hobbies are reading, exploring the outdoors, participating and volunteering in various community programs, and spending time with her family. She looks forward to adding value to the CEC through her skills and experiences.
Chenxin Jin
Chenxin Jin obtained her PhD in materials engineering from Dalhousie University in 2016. While working as a postdoctoral fellow in the Department of Chemical and Materials Engineering, University of Alberta, she and her husband welcomed identical twin girls Laura and Layla. Layla has level IV spastic quadriplegia cerebral palsy while her sister Laura is typically developed. With her researcher background, Chenxin hopes to bring her ideas, insights and thoughts to supporting patient-oriented research, as a mom of both a neurotypical child and a child with disabilities.
She enjoys being Laura and Layla’s mom and you will find them involved in lots of community activities, advocating for inclusion and diversity, and spending a lot of time with their family dog.
Karena Crumpler
Karena lives in the traditional unceded territory of the K'ómoks First Nation.
She was born and raised on northern Vancouver Island and currently resides in the Valley with her husband and two boys. Her oldest son lives with cerebral palsy; her family’s experience is what brings her to CHILD-BRIGHT and the CEC.
It is only in the recent years of her parenting journey that she has learned to trust herself, honour and value her voice, and advocate for her son’s care and consideration. She also has come to recognize that the knowledge brought about through lived experience is valuable and should be heard.
She wants to use her own complex upbringing of being of mixed heritage and reconnecting with her roots and Indigenous ancestry to elevate the needs of parents in more remote communities to be included and heard.
Her volunteer experience includes supporting families who have family members with disabilities. This includes community outreach as well as parent-to-parent support with the Family Support Institute. She is a Director for the Cerebral Palsy Association of BC as well a 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 – another avenue in her life that emerged from being a mom to a child with a brain-based development disability.
Michelle Vautour-Shales
Michelle is a human resources consultant with close to 20 years of experience specializing in recruitment, talent management and development as well as performance management. She has experience working in Canada and abroad and holds a Bachelor of Arts with a major in Psychology from the University of Ottawa.
A curious lifelong learner, Michelle is motivated by discovery and by challenging the status quo through innovation and research to improve the outcomes of children with disabilities. Michelle is a strong advocate for knowledge sharing and patient involvement in research, having served as a Family Leader with the Children's Hospital of Eastern Ontario since 2018, where she has reviewed and provided input on a number of research projects.
Michelle loves to think outside the box and put those skills to work to eliminate barriers to a fully inclusive society. She is a passionate advocate for inclusion and accessibility and was nominated to sit as an Easter Seals representative on the Special Education and Accessibility Committee for the Conseil des écoles catholiques du Centre-Est.
In addition to her keen interest in research, having lived across the country, on both the Atlantic and Pacific coasts, as well as in Quebec and Ontario, Michelle hopes to bring her resourcefulness as well as her networking skills to CHILD-BRIGHT to help its growth and showcase the important work being done.
Suzanne Deliscar
Welcome also to new CEC member Suzanne Deliscar!
Welcome to our new members!