Friday, April 25, 2025

Today, Ontario’s ALS society raised its original goal from $100,000 to $1,000,000 — and it expects to reach that goal. Today alone, donations more than doubled from $60,000 to $140,000.

Few people appreciate the ice bucket challenge like Tim and Beth Robertson. 10 years ago Tim played hockey, golf, cycled, and had a lucrative job in banking.

Tim: “Watching the muscles shrink ’til eventually they don’t work. It’s tough.”

Beth: “It started in his feet and his ankle would roll a lot when we were golfing, and it worked its way up his legs.”

At this point Robertson can only move his right hand enough to operate his wheelchair toggle. But most ALS patients don’t live longer than five years.

Of about 200 patients who get care at the Hamilton Health Sciences ALS clinic, Robertson has been treated the longest. His doctor, John Turnbull, has been studying ALS for 25 years.

He says the muscles stop working because the brain cells that tell them what to do, die. “The motor neurons, the cells that are dying in ALS, we’re trying to understand why they die, which is a challenge. It’s a disease we really don’t understand very well.”

Invariably, the patient dies.

“You can’t breathe, usually. Nearly always it’s because you can’t breathe.”

Turnbull says researchers have learned more about the disease in the past three years than in the hundred years before that. “I think this is probably going to be a curable disease.”

But until celebrities started dumping ice water on their heads, no one was opening their wallets for ALS.

Beth: “My daughter’s run the ALS walk for Halton for 10 years, and you struggle.”

Tim: “The more people that know about the disease, the better.”

The money will go toward research, but it also helps patients get equipment, like the device Robertson has to use to get into his chair.