Today I speak with Susan, founder of OPAAC (Ontario Parents Advocating for Childhood Cancer), about the development of parent-led advocacy in pediatric oncology. Susan shares how her daughter’s diagnosis in 1995 led to her becoming a parent liaison at SickKids Hospital and eventually establishing OPAAC in 1997. Today, it remains the only parent-led childhood cancer advocacy organization of its kind in Ontario.
Our conversation explores how advocacy often begins with lived experience and evolves into structured, system-level engagement. Susan explains the difference between “Big A” advocacy — policy work, formal partnerships, and participation in hospital decision-making — and “Little a” advocacy, which includes peer support, attending appointments with parents, and staying connected to families during and after treatment.
We talk about why parents can feel overlooked within the healthcare system, how support needs change significantly once treatment ends, and why relationship-building with healthcare teams is essential for sustainable change. The episode offers a practical look at how parents can move from emotional response to effective advocacy, and how organizations like OPAAC create meaningful support for families across the treatment continuum.
You can find out more about Susan and OPACC here: https://www.opacc.org/
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