Author: Ivana Ristevski
Taline Dorna has been a member of the Canadian Retinoblastoma Research Advisory Board (CRRAB) since 2017 and along with her family she has participated in many different CRRAB activities. As a teacher, mom of 3, wife, and an aspiring author, Taline works around her schedule to participate in CRRAB activities in order to learn more about retinoblastoma, meet other families, keep up to date on research and to make a difference.
Taline’s journey started when her son was diagnosed with unilateral retinoblastoma at 5 months old.
For a couple of months, my husband and I had noticed that our son had an odd glow in his left eye. We mostly saw this glow when we took a picture of our son using the flash on our phone cameras. We dismissed it thinking it was likely the flash or bad lighting. After some time, we noticed the glow under dim lighting, depending on the angle the light was hitting his eye. This became concerning, and so we decided to take him to our pediatrician for a checkup. Our pediatrician had never seen anything like this before and was perplexed herself.
They saw an ophthalmologist and were immediately sent to SickKids where they received the diagnosis and treatment.
Taline and her family started participating in CRRAB by attended their first symposium in 2018 where they participated in discussions to shape research projects and created dissemination materials to raise awareness of the Top 10 Retinoblastoma Research Priorities. The kids attended the Child Life program where they enjoyed doing medical play.
In 2020 Taline attended her second Retinoblastoma Research Symposium and participated in a research workshop to provide input on the design of the stickers to be used on the Retinoblastoma Journey Map, a project which will be tested for its use in providing a pathway of care for families of a child newly diagnosed with retinoblastoma.
As an educator, I was able to contribute my expertise and skills and apply it to something that will be an instrumental piece in the lives of other RB patients and survivors.
Participating in research can take many different forms and CRRAB helps to facilitate this by offering different ways to be involved such as:
- hosting the annual Retinoblastoma Research Symposium
- sharing opportunities to participate in research through the Retinoblastoma Research Registry by bringing forth vetted research studies
- offering platforms for engagement which include the monthly Regional Working Group calls and project specific patient partnerships
By being involved with CRRAB, I feel I’m able to gain a better understanding of the cancer my son had and what I can do to apply my skills to help raise awareness.”
“I’m currently in the midst of publishing my first children’s book that talks about a boy with RB that loses his ordinary eye and get’s an extraordinary eye! I wanted to do something to honour my sons name and help other children with RB feel good about themselves while raising awareness.
If you are interested in staying up to date on retinoblastoma research and events, sign up to the Retinoblastoma Research Registry.
If you are interested in participating in any of the CRRAB activities, send us an email at: retinoblastoma.research@sickkids.ca