Author: Ivana Ristevski
I heard about Ontario Parents Advocating for Children with Cancer (OPACC) when we got our son’s retinoblastoma diagnosis and learned how they have programs that can help families with hospital parking and provide backyard playgrounds. Once we started seeing Oncology on the 8th floor of SickKids I would often see the Parent Liaisons during our appointments. The Parent Liaisons always brought coffee to break the ice and help the parents get through the day.
However, OPACC is more than just that, they are a registered charity which supports families by being the leading voice and expert resource for families (including retinoblastoma) navigating childhood cancer. They support families through various programs such as the Parent Liaison program at SickKids and Credit Valley Hospital (currently offered virtually), community-based parent support groups, and advocacy efforts which enable parents to advocate for themselves as well as advocate on behalf of families on a provincial level.
One of the many programs OPACC offers is an online guest speaker series featuring different expert offering information to childhood cancer families. CRRAB was invited to be a guest speaker in May and share information about how patients partner in retinoblastoma research and I had the pleasure of presenting. You can watch the video of the presentation below and learn more about how retinoblastoma families and survivors have partnered in retinoblastoma research by sharing their lived experience and skills.