Richelle Baddeliyanage
I am a retinoblastoma survivor, advocate and program coordinator for the Champion program. At 22 months, I was diagnosed with bilateral retinoblastoma and today, at 23 years, I am passionate and committed to retinoblastoma patient engagement and research. An undergraduate degree in biology, from Dalhousie University, has set me on course to pursue my interest in ocular genetics. Currently, I am working as a Research Assistant in an ophthalmology clinic in Halifax with a goal of being a genetic counselor in the near future.
Ivana Ristevski
I am a mom of a bilateral retinoblastoma patient and an advocate of retinoblastoma research. Together with Richelle, I am a co-coordinator of the RB Champion program. I have been an active participant in patient engagement in retinoblastoma research since 2017 when I became a member of the Canadian Retinoblastoma Research Advisory Board (CRRAB) and was a key participant in the CRRAB Steering Committee and Priority Setting Workshop that determined the Top 10 Retinoblastoma Research Priorities. With a background in business, I am currently a Clinical Research Project Coordinator at SickKids.
Barbra Mohan
I am the wife of a bilateral retinoblastoma survivor Stephen, and mother of Jasper who was successfully treated in infancy, but relapsed with a pineal tumour 11 years later and passed away at the age of 15. I have presented to various oncology practitioners and medical students on the subjects of bereavement and compassion in medicine. I am currently a member of the Family Advisory Committee at Canuck Place Children’s Hospice. Much about my son’s relapse remains a mystery, and the fact that my husband survived but my son didn’t suggests to me that more research is desperately needed. Additionally, as a 48-year old survivor, my husband faces ongoing secondary health problems and tumour development in the field of radiation – both benign and malignant. More research on long term survivors could help him live a full healthy life – something that is far from certain at this time. An undergraduate biology degree has always been a help in understanding the medical journeys my family has taken, including my own as a thyroid cancer survivor. I currently work as a Human Resources Manager for local government. I live in Duncan, BC on Vancouver Island.
Tara Lupa
As a first time mom, with a four month old, the last thing I expected to face was cancer; however, I am now the proud mom of a seven year old survivor and thriver. The loss of his right eye to a giant tumour at such a young age hasn’t slowed this kid down for a second. My goal through the 3 & 1/2 years of active treatment was to make his life as normal as possible. He thinks all hospitals are as amazing and fun as his trips to SickKids. This is a devastating diagnosis in children who’ve barely just arrived into the world. Support for parents is critical in raising the most wonderful (normal and healthy as they can be) children. I’m fortunate to be a co-founder of the ‘Parents of Children with Retinoblastoma treated at SickKids Toronto’ facebook group. Blake is a proud survivor who happily shows his prosthetic eye to anyone who cares to see (most can’t tell the difference).
Taline Dorna
My name is Taline Dorna, and I’m the parent of an RB survivor and hero. Our RB story started in July of 2017. Our son, Logan, was only 5 and a half 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. She didn’t think it was anything malignant as our son would be presenting symptoms of vomiting etc. I wanted answers now. And with our persistence, we were able to get our pediatrician to book an appointment with an opthamologist. Luckily, we got in the very next day. The ophthalmologist dilated our sons eyes and discovered that he had a lesion. We were immediately sent to the Sick Kids Eye Clinic for investigation. Dr. Gallie, Dr. Solimon and the RB team performed a series of tests and determined that our son had Unilateral Retinoblastoma. We were devastated and didn’t know what this meant for our son. A couple days later, my son had an MRI to determined the severity of the issue. Just 5 days later, he had an EUA and it was decided that our son was going to have his left eye enucleated. His pathology came back about 4 weeks post surgery, and we got the all clear. We were fortunate to have taken care of this in it’s early stages. Our son did not receive further treatment, as he did not present high risk features. He lives a full life with a prosthetic eye. We are seen by the opthamologist at the Eye Clinic at Sick Kids every 6 months, as well as regular maintenance of his prosthetic eye. Logan has been cancer free since July 13th, 2017.
I joined the Canadian Retinoblastoma Research and Advisory Board (CRRAB) in the fall of 2017. I attended my first symposium with my husband Serge and our 3 wonderful kids, Sydney, Kaylee and Logan, in January of 2018. CRRAB is a great way to get involved with research and provide input by contributing ideas. Joining the registry has given me opportunities to meet other families effected by Retinoblastoma and by keeping current with new research. One of the most memorable things I was involved in was the creation and implementation of the RB Journey Maps. I attended the RB Journey Maps workshop in January 2020 at the RB Symposium. I assisted in developing sticker designs for the RB Journey Maps and implemented some great visuals to coincide with the maps. 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. 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. 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. Join CRRAB today to make a difference.
Mitch Hendry
I was diagnosed with unilateral sporadic retinoblastoma at 3 years old. I was playing dress-up with my mom when we discovered that I could not see if I put a pirate’s eye patch on my left eye. While I don’t remember much of the treatment, I do remember learning that I had a disease that usually ran in families—but nobody else in my family had the same disease. This contradiction led to a fascination with genetics from an early age which led me to pursue a degree in the subject. While I was working on my degree and now in my career, I have come to appreciate the positive impacts that research can have for survivors as well as the immense challenges that come with studying rare diseases. These challenges motivated me to get involved with CRRAB to help secure funding, encourage participation in research, and bolster supports for families!
Alena Vincent
Retinoblastoma has affected my family for 3 generations. My mom was the first in our family followed by me and then my daughter. I am in awe of the positive impact that research and medical advancements can have as these changed my life. My mom lost both her eyes to retinoblastoma, but thanks to early diagnosis and advanced treatment methods both my daughter and I have retained 100% of our vision. Although this is amazing, I have noticed there is still work to be done. I have found there is a lack of knowledge within the medical field not only in diagnosis, but in the long-term effects that the RB1 gene can pose. This can result in the concerns of an RB1 carrier not being taken seriously. In addition, the treatment for both hereditary and non-hereditary patients can have both short and long term ramifications medically, psychologically, and financially not only on the patient but on their families. The collaborative work that CRRAB does with survivors, parents, and professionals to address these affects gives me hope that my daughter’s future is in good hands. My daughter is almost 3 years cancer free with 20/20 vision in one eye and 20/25 in the other, I am 33 years cancer free and have 20/20 vision in both eyes. I currently work as a Finance Assistant for a children’s non-profit agency in Edmonton.