London, Ont. boy organizes first ALS walk at his elementary school

The first Walk for ALS this year has taken place at an elementary school in London, Ont.

It was organized, not by a local organization, but by a boy for whom the disease hits close to home.

“He’s not sad that we have to help him, it’s more that he’s no longer able to do the same things that he was before,” said Colin Brown.

The 13-year-old grade eight student was referring to his father, Matthew Brown. Now 53-years-old, Mr. Brown was diagnosed with ALS 15 months ago.

On Thursday, Colin organized an ALS walk at his school, Louise Arbour French Immersion Public School. Nearly all of the school’s 600 children took part.

Colin said it’s his way of coping with the disease that has struck his family.

“My father was diagnosed about 15 months ago, and of course that’s not very easy to deal with,” said Colin. “So I thought that this would be my way of expressing that and my way of helping. Not just my father, who has ALS, but the entire community of ALS patients.”

Colin Brown, a 13-year-old grade 8 student at Louise Arbour French Immersion Public School, was embraced by his mother Cathy Brown on June 1, 2023. (Bryan Bicknell/CTV News London)

While Mr. Brown is currently in hospital being treated for ALS, Colin’s mother, Cathy Brown, said she gets her strength from her boys, Colin and his brother 16-year-old Jayson. She’s also buoyed by the support of the community around her.

“Words can’t express how touched I am to have so much community around my family,” she said.

Louise Arbour teacher Simone Fraser, a friend of the Brown family, said the walk is a chance for children to learn about both the disease and advocacy.

“When it hits close to home, it’s important that members of the community know, including the kids in school that are essentially peers of Colin,” she said. “So we’re hoping that the message is support, empathy, and encouragement to help support the research into the disease as they get older.”

According to the ALS Society, ALS is ageless. Anyone can get it, from children to the elderly.

The fatal neurological disease is also still fairly rare. Only about 1000 people in Ontario are living with it and 3000 across Canada.

ALS Southwestern Ontario Team Lead Sheila Dorsch said there’s plenty of reason for hope.

“There’ll be a cure one day,” said Dorsch. “There’s scientists who are working endlessly, and researchers who are just trying to find some answers around this really confusing, confusing disease.”

There are 21 ALS walks across Ontario this month, including the London ALS Walk, scheduled for June 24 at Springbank Gardens.

In the meantime, Colin’s ALS walk aims to raise $1,500 for ALS research and equipment. But more importantly, Colin said he wants to bring awareness, and make his dad proud at the same time.

“I hope to be able to go to the hospital to see him today and tell him about this, and see him proud, and see what I’ve done to help him,” said Colin.