Riverview mom sets up Canada's first brain tumour registry in memory of son
Published Thursday, June 6, 2019 3:57PM ADT
Last Updated Friday, June 7, 2019 8:42AM ADT
A mother started working three years ago to create Canada's first brain tumour registry in memory of her son.
After three years of determination, it’s now tracking patient data across the country.
Jennifer Gouchie-Terris is the driving force behind the creation of the registry.
“What it's going to do is give us better data which will lead to hopefully more funding for research, better clinical trials, better treatments, better patient advocacy, better access to drugs,” said Gouchie-Terris.
It's an issue close to her heart.
Her son Brandon was diagnosed with a non-malignant brain tumour at just four years old. He passed away at 18.
“Brain tumors are the leading cause of solid cancer in kids under 20,” said Gouchie-Terris.
Before Brandon passed away in 2012, Gouchie-Terris and her son began the registry project.
Back then, brain tumor data had to be extrapolated from the United States or elsewhere.
They hoped theirs would offer more accurate patient information in Canada.
“If it's the last thing that I do, or in my time on Earth, I want to make sure I finish this project for him.”
And that she did.
Gouchie-Terris and her husband raised $60,000 on a cycling trek in Southeast Asia.
Three weeks ago, the registry was announced in the House of Commons.
“Working with the Canadian Alliance of Brain Tumour Organizations, we were able to develop a private-members motion, which called on the government to help develop a national brain tumour registry,” said Nova Scotia MP Bill Casey.
An official launch was made in Toronto on May 14.
The website offers an inside look into how many people are affected in Canada and resources to better understand how to move forward.
“The registry is going to give us better data,” said Gouchie-Terris. “There's real gaps in the data up until now, because a lot of the non-malignant tumors were not being counted.”
Gouchie-Terris says it gives her some peace of mind every day, knowing the registry was exactly what Brandon wanted.
“He asked me to keep fighting for the registry, it was very important to him, and I took that promise very seriously,” Gouchie-Terris said.
Gouchie-Terris says further funding is needed, but she's glad the project is finally off the ground -- putting minds at ease and offering hope for the future.
With files from CTV Atlantic’s Kate Walker.