A decade since the Ice Bucket Challenge, a new treatment is in development due to fundraiser

While scrolling on social media in 2014, it was not rare to see videos tagged with the #IceBucketChallenge.

Ten years later, ALS Canada says the social media phenomenon has had a lasting impact.

The fundraiser was a rare moment of hope and visibility for those suffering from ALS, or amyotrophic lateral sclerosis, a disease that slowly paralyzes patients. It has also boosted research efforts drastically since 2014.

For Norman MacIsaac, it was also in 2014 that he received his ALS diagnosis.

MacIsaac is now an outspoken patient advocate for ALS and an ALS Quebec board member. He has lived first-hand the fallout of the Ice Bucket Challenge while following the progression of his disease.

"Since then, I've seen a flurry of clinical trials and advancements," he said, noting that he himself has been a part of five clinical trials. "I've been lucky to survive almost 10 years with ALS, so far. If I am lucky, I think there are big advancements coming in the next five years."

The Ice Bucket Challenge has raised $17.2 million for ALS over 260,000 Canadian donors. Over $11 million was invested in research, while the rest was allocated towards services for people living with ALS across Canada.

Currently, more than 4,000 Canadians are living with ALS.

According to Dr. David Taylor, vice president of research and strategic partnerships with ALS Canada, even though this amount of money is small relative to most treatable diseases, it has contributed to making big strides in treatment development for ALS.

"We've made huge advancements in terms of getting things into clinical trials, and now, we actually have a small subset of people with ALS who have a treatable disease. We know this can be treated with a specific therapy—but about 2 per cent—we need to extend that to everybody," said Taylor.

Taylor refers to Tofersen, a new drug that targets specific proteins that contribute to the development of ALS in patients.

Dr. Angela Genge, director of McGill's ALS Centre of Excellence, hailed Tofersen as a treatment that is not just meant to slow symptoms of ALS.

"[Tofersen] gives us, finally, a pathway where we can actually stop the disease," she said. "And that's what's so remarkable about this treatment. The other treatments we have so far—there are not many—slow the disease down. This one actually stops it, and in certain patients, actually, they improve, go back to normal on the drug. It's not a cure, because they have to continue taking the drug, but it it's more like a cancer going into remission."

Tofersen was one treatment boosted by donations from the Ice Bucket Challenge.

"The Ice Bucket Challenge has definitely made it so that there will be people in the future who would have gotten ALS and will not get ALS because of the Ice Bucket Challenge," Taylor said. "Our hope is that what we can find what is the exact Tofersen equivalent for the 98 per cent of other people with ALS."

Biogen Canada, the company behind Tofersen, submitted an authorization request for Tofersen on March 2024. Health Canada said it is currently reviewing the evidence to ensure that the product complies with safety, efficacy and quality requirements.

Living with ALS

MacIsaac has been suffering from ALS for a decade now. Before he was diagnosed, he knew something was off when he began losing control of his legs, dropping things randomly, and falling.

The disease gradually progressed. He began using a cane, then crutches, then a walker, and now, his electric wheelchair.

It was life-altering for MacIsaac, who used to be very active.

"I was very active before, I used to bike and skate and ski and I loved to take long walks," he said. "And I also speak several languages, and now I have difficulty speaking French or English. Spanish is difficult because it is faster. It's a disease that affects one's identity because it affects how you interact with the world and people."

MacIsaac learned to live with the disease but also to accept the help of others.

"I was someone who was really self-reliant before, I was the one helping others," he said.

However, he remains optimistic.

"Since I was diagnosed in 2014, I've seen an explosion in the number of clinical trials and medical advancements that give me a lot of hope. I think we're really close to having a cure," he said. "It's important to know that the work is not done, we need to continue the research.

"I hope I'm part of the last generation of people that die of ALS. I hope that we will see advancements that do more than slow ALS."

Continuing the momentum

In light of the 10th anniversary of the Ice Bucket Challenge, ALS Canada is hoping for a resurgence of the trend and has called on all Canadians to fill their ice trays and buckets to continue funding treatment research.

"Anything anyone can provide will make a difference, because this is an underfunded disease and we've learned over the years how to use those funds effectively."