A year after a shocking diagnosis, London family spreads ALS awareness

A roller coaster of emotions is how Catherine Brown described her family's life after her husband Matt was diagnosed with amyotrophic lateral sclerosis (ALS) last year.

Also known as Lou Gehrig's Disease, ALS is a rare neurological disease that affects the brain and spinal cord's ability to communicate with muscles, which inevitably leads to death. The disease affects between 2,500 and 3,000 Canadians, and there is no known cure.

To help spread awareness, Catherine and Matt's youngest son Colin helped organize a fundraising walk at Louise Arbour French Immersion Public School in London on June 1.

Brown said her son, who is in grade 8, had difficulty accepting his father's diagnosis last year.

"Then over time in the summer, he started asking Matt questions and opening up," she said.

Now, in addition to the fundraiser and information session, she said Colin wrote a paper about ALS, which his father uses to spread awareness of his condition.

None of that would have been possible without the support of Simone Fraser, a teacher at Louise Arbour.

School rallies to host fundraiser

Fraser said Brown first approached her a few weeks ago with her son's idea, and was happy to help organize the event despite the short notice.

"June is inevitably a really busy month for schools," said Fraser. "There's lots of other fundraising initiatives but I have wonderful colleagues and administration who have been very supportive in our efforts to bring attention to this terrible disease, especially since it hits so close to home."

Fraser said they're hoping to raise $1,500 for research and provide support for patients, including equipment that can be costly.

"It's hard to ask for more when people are already giving so much but everyone knows that it's an important thing, especially because we have a member of our school community who's suffering from it," she said.

"Colin's passion for advocacy around this disease has just propelled him forward, and it's incredible to just be part of this journey with them," said Sheila Dorsch, the ALS Society of Canada's regional manager.

Dorsch said she will be answering questions about ALS after Colin's presentation at Louise Arbour French Immersion.

"For public speaking to be one of his worst nightmares and seeing him putting that aside to advocate for his dad has been inspiring," said Dorsch.

Despite challenges, family grows closer

Catherine said the past year has been been difficult for the family.

"It's just like being in a constant grieving process because we are watching Matt continually lose the use of his arms as they get weaker. His ability to walk has become weaker, and his dependency has gone up," she said.

Despite this, Catherine said the challenges have brought the family closer together, and the support of friends and family has been uplifting.

"I wouldn't be coping if I didn't have so much community support around me and the kindness that has been outpouring to us. It's just been incredible."