Author: Tricha Worobec

In January 2020 we had the honour of attending the Retinoblastoma Research Symposium in Toronto. This brought our family many learning opportunities, but most importantly provided us all with a deep sense of empowerment. 

The Canadian Retinoblastoma Research Board focuses on Patient Oriented Research. This allows patients to drive the priorities and outcomes for research. We gained knowledge of the fundamentals of Patient Oriented Research. Personally, since my expertise comes from being a parent of an RB survivor, the practice of speaking in a large auditorium with specialized doctors, researchers, ocularists, child life specialists, and geneticists would normally be intimidating. However, in this scenario, the focus is on inclusivity, co-learning, and mutual respect, so everyone who spoke, including myself, were equally valued; the entire experience was empowering. It was obvious that the primary focus of Patient Oriented Research is authentic partnership between patients and professionals. 

My partner and I were able to develop connections with other individuals affected with RB. While socializing with RB survivors from different age categories, they provided their own expertise from personal lived experiences that gave us insight to which we would have never known. We learned new techniques to help with the care of our son’s prosthetics as well as tricks to support him with depth perception and learning in school.  

In attendance with us at the symposium was our two children, our youngest Konnor who is our five-year-old RB survivor and our eldest Roman who is nine years old. Both of our children had the most incredible time learning, playing and engaging with the child life specialists and the amazing volunteers. Roman told us that he felt equally included in learning about RB and how people were equally interested in him as they were his RB survivor brother. Konnor was moved to tears when the event had come to an end, stating he didn’t want to leave the people who were just like him, who also had a “magic eye”. I was shocked to learn that Konnor had these big feelings of being different and made deep bonds with people who he said, “are just like me.”  It was not just resources that we gained at the symposium. We left with being empowered, connected, and most importantly with hope in knowing that the essential research being conducted is coming from our voices from within the RB community. We left knowing that each one of us can make a difference through research engagement.