Our Youth

We were pleased to announce the addition of Neela Spurway to the NYAP! Based in Nova Scotia, Neela was a Grade 12 student upon joining the NYAP in 2021, with plans to go to Nova Scotia Community College to study Applied Media and Communication Arts.

As part of our fee-based youth consultation service, the NYAP works with Canadian researchers working on childhood disability projects who need input from youth with brain-based developmental disabilities to shape their studies.

NYAP member Gillian Backlin accepted the first consultation mandate external to CHILD-BRIGHT in June 2021, for the Partnering for Pain and iOuch research teams. She participated in virtual sessions and consulted on an infographic/paper about engaging youth in a dialogue around access to virtual care during the COVID-19 pandemic. Learn more.

Several NYAP members, including Gillian, chairperson Logan Wong, Claire Dawe-McCord, and Hans Dupuis, then consulted with the “Nothing Without Us” study team. Gillian joined the study’s patient advisory council, while Logan, Claire, and Hans all provided feedback on a survey for youth on the impacts of the COVID-19 pandemic on young people’s mental health. Learn more.

Finally, Gillian provided a review of the Project 2050: Climate-friendly habits to change the world! website, a joint effort from the Jooay App and Earth Rangers teams. Gillian helped ensure the website was accessible to, and inclusive of, children with disabilities. Learn more.

Multiple NYAP members led a webinar as part of the CHILD-BRIGHT 2021 Learning Series. Logan, Shafniya Kanagaratnam, and Gilian, along with Citizen Engagement Program Coordinator/Project Manager Corinne Lalonde and Administrative Assistant Julia Tesolin, spoke to diversity, accessibility, and accommodation considerations when engaging youth in patient-oriented research.

As a group, the NYAP is also committed to engaging in a continual learning process, including about colonialism and systemic racism in pediatric health care. In December 2021, we were grateful to welcome Citizen Engagement Council member and Wisdom Translator Symbia Barnaby to our NYAP meeting, where she gave a presentation on the importance of Indigenous land acknowledgements.

A priority for NYAP in CHILD-BRIGHT’s Phase 2 is recruiting members to ensure more voices are heard. We received much interest from youth with brain-based developmental disabilities across Canada. You can visit CHILD-BRIGHT’s website to meet our newest members as they are announced!

“Before joining the NYAP, I had no previous exposure to patient-oriented research. Being part of consultation projects allowed me to think critically about the challenges individuals with brain-based disabilities and researchers face. The opportunity to share my lived experience is rewarding. It showed me that it is valuable and credible in many ways and the NYAP has provided a platform to express myself […] I look forward to the opportunities Phase 2 will bring us.” - Shafniya Kanagaratnam, NYAP member