Author: Max Gelkopf, BSc

My name is Max and I’m a research student working in The Dimaras Lab. I’ve been incredibly fortunate to work with The Canadian Retinoblastoma Research Advisory Board (CRRAB) for the last year, specifically with the priority setting project and more recently with the patient engagement strategy. As a student I’ve truly appreciated the opportunity to learn first hand about the research field from a diverse group of patients, health professionals, and researchers. I’ve been able to see immense growth of CRRAB throughout the last year. We’ve seen an increase in CRRAB membership, registry involvement, social media engagement and overall interest. As CRRAB continues to grow, we continue to think of new strategies to improve our patient engagement strategy.

This summer we initiated a Retinoblastoma Awareness Table in the Retinoblastoma Clinic at SickKids. During the monthly retinoblastoma follow up clinic we hosted a table outside the Eye Clinic with information on The Canadian Retinoblastoma Research Registry, infographics, colouring pages, and Elli the Elephant.

We even had elephant feet on the ground to help people find Elli outside the clinic!

We had many interested people approach us to learn more about the Registry and CRRAB, taking our promotion materials. We also had a lot of fun colouring some great pictures of crabs and eyes.

If you want to help creating your own awareness table, please email retinoblastoma.research@sickkids.ca for materials and guidance.