On Saturday (May 2), Peterborough City Hall was lit up in grey, yellow, and teal to join the many landmarks across the country that will be illuminated throughout May in honour of Brain Cancer Awareness Month (also called Brain Tumour Awareness Month).
The grey represents awareness, yellow honours the children who have been affected, and teal represents strength and hope.
Peterborough resident and Brain Cancer Canada ambassador Brooke Roberts stood outside the building for the occasion, holding a framed photo of her late daughter Sofie, who died on May 17, 2024 at the age of nine years old from a high-grade glioma — a type of tumour that occurs in the brain or spinal cord, arising from glial cells that support neurons.
“A big thank you to Peterborough because living in the community and having been affected, I think it’s just really special that they would support the initiative,” Brooke says. “Being lit up all over Canada is exciting to not just start May off with a bang but to bring awareness to brain cancer, and to honour the loved ones and the families who struggle or who we’ve lost. It’s very special.”
Spreading awareness and supporting others affected by brain cancer is what Sofie would have wanted, Brooke says. An avid reader, creative, lover of the colour purple, and best friend to her younger sister Stella, Sofie had “a smile that could light up the room.” It was a smile she wore even as she underwent two craniotomies and 33 daily round trips to Toronto for radiology.
“She would even remind me of these wonderful heavenly truths about where courage comes from and she would be encouraging me,” says Brooke, adding they shared a deep Christian faith.
“Her life has impacted so many all over because of social media. We had people praying for her all over the place. I keep hearing these stories of how people have used her courage to help someone else or maybe in their own walk or to give them courage in hard times. So, the Lord’s using her in many, many ways even now, and it’s just so encouraging.”
Her daughter’s resilience, strength, and courage drives Brooke’s mission to fight for other families.
“Because her tumour was rare, she said ‘Mom, maybe one day my tumour will help another family,’ and remembering that conversation helps me to just want to jump in and help other families as much as I’m able.”
Today, Brooke continues to make Sofie’s dream a reality by being an ambassador for Brain Cancer Canada, a national charity run by a group of volunteers who have all been affected by the disease. Brain Cancer Canada funds research and technologies while advocating for effective treatment of primary brain tumours.
“Brain cancer is actually the leading cause of death in cancer-related deaths in children and young adults under 40, and yet we are significantly underfunded,” says Brooke.
According to Brain Cancer Canada, though nine children and adults are diagnosed with brain cancer in Canada every day, brain cancer only receives three to four per cent of the funding that is raised for cancer research in Canada.
“We are significantly underfunded as a group and that’s really sad,” Brooke says. “Because of the prognosis and severity of the cancer and where it’s located, it’s extremely catastrophic in the brain. The prognosis is quite grim.”
“We’re looking at, for the most aggressive cancers, about 15 to 18 months survival rate. We’re not sure if that plays a role into how they allocate funding but if this is the case, it’s very devastating and sad. All cancers deserve equal funding.”
Brain Cancer Canada is bridging this gap through a number of initiatives, including funding research grants for scientists and neurologists as well as advocating for patient access to drugs, multiple forms of treatment, and increased availability of neuro-surgical technologies and care.
Though Sofie was first diagnosed with a low-grade glioma in September 2022, which she had successfully removed, it came back the following May having morphed into high-grade glioma. Her family was told there was a medicine to treat her exact rare mutation in the U.S., but they weren’t able to access it quickly in Canada.
“That’s encouraging and exciting as a family, but then you realize brain cancer doesn’t afford you that time,” Brooke recalls. “We don’t have time to wait for it to get into Canada and be approved. We don’t have time to take her to the U.S. or Europe where these treatments are readily available.”
“Brain Cancer Canada is working hard for the access to these things to be immediate for families like mine, rather than have it dangled like a carrot and yet we can’t receive it. That is our goal: to help Canada become the leader in this department and to give families access to these things.”
Throughout Brain Cancer Awareness Month, Brain Cancer Canada and ambassadors like Brooke are using the campaign to spread awareness about underfunding, as well as the 120 different types of brain tumours and their symptoms.
“It’s such an awful disease,” says Brooke. “Because of where it lives in the body, you often lose your person before you lose them physically because it changes them. Surgeries are risky, and you often come away from surgeries with a changed person — personality, memory, physically. You lose your person, and it robs the individual of a quality of life, so we just hope and pray that one day we’ll be a leader in brain cancer initiatives in Canada.”
The goal throughout the month is to encourage others to “Go Grey in May.” Community members are encouraged to greyscale their social media profile pictures with the official grey ribbon, share their stories, join the Gala for Brain Cancer Research on Friday, May 22, start a fundraiser, or find other ways to raise awareness.
For her part, Brooke will also be hosting the third annual “5K for Sofie Maye.”
Held on Saturday, May 30, the event will see dozens of Sofie’s friends and family members walking or running five kilometres, often while donning her favourite colour purple. With a barbeque, silent auction, and a community of loved ones coming together, Brooke says it brings light to what is otherwise a difficult time of year for the family.
“That’s a heavy month for us because we lost Sofie on the 17th of May. but filling that month will all these things is just really helpful and good,” says Brooke. “There are lots of tears and lots of laughter. It’s a great way to get through a tough month.”
Through 5K for Sofie Maye, Brooke hopes to raise at least $5,000 to support Brain Cancer Canada.
“I tell people you can come and walk or run or crawl, but we’re going to get it done,” says Brooke. “All of my drive to do what we do is to honour her. She did many, many, many hard things over the course of the three years. We can do these hard things, too, with her courage as quite an example for the rest of us.”
To donate to 5K for Sofie Maye, visit braincancercanada.akaraisin.com/ui/fundraise/p/ed281fed9d09425ba92d4d943f71eab4.
