Family Engagement Facilitator
Research and Knowledge Translation Support
Rachel came to CanChild a parent of a young man born with a rare chromosome diagnosis, CP and autism. He has since passed away, but her partnership with researchers continues on in his memory. She works as a Research Engagement Strategist with the Family Engagement in Research Course, supporting family members and researchers as they learn to partner in projects. She also facilitates engagement and promotes knowledge mobilization through a variety of other initiatives. Initiatives such as the online group Parents Partnering in Research, and Luke’s Legacy Family Research Rounds ensure more opportunities for connection and community participation. Rachel has an interest in federal and provincial disability policy and uses writing as a tool for advocacy. She is currently studying part-time in university studying population health.
Areas of Focus
Pediatric disability policy, caregiver well-being.
Disability is a culture of identity to which parents aren’t given a handbook, and families of children with disabilities often experience significant stress and feelings of isolation. Social media can be an excellent tool for connecting with other families to share lived experience, support, resources and mentorship, while the accessibility of social media can bridge the barriers of geographic distance and rare diagnoses.