(Montreal) A fun challenge to raise awareness about amyotrophic lateral sclerosis (ALS) began 10 years ago in the United States. The “Ice Bucket Challenge” quickly went viral on social media. The movement has helped advance research and a better understanding of the disease.
ALS is the most common form of motor neuron disease. It destroys nerve cells in the body, causing voluntary muscles to waste away and become weaker over time.
ALS eventually spreads throughout the body, gradually affecting all voluntary muscles up to the muscles involved in breathing, leading to breathing problems.
“After being diagnosed with ALS, 80% of people with the disease have a life expectancy of two to five years. The speed at which a person loses the use of their muscles can vary considerably,” explains the ALS Quebec website.
Ten years ago, celebrities from around the world took part in the “Ice Bucket Challenge,” which involved pouring a bucket of ice water over their heads. Participants were asked to make a donation.
It was August 2014 when three people with ALS in the United States took on the challenge of throwing ice water on their heads and challenging three other people to do the same.
Claudine Cook, General Director of SLA Quebec
Mme Cook will never forget this moment in her career. “We are very grateful for the impact of this campaign, it was a godsend for our cause,” she recalls.
In 2014, donations broke records. In Canada, $17.2 million was raised that year. Of that, $11 million was invested in research in Canada, and the remainder was allocated to programs and services for people living with ALS.
In Quebec, the year the “Ice Bucket Challenge” was launched, $2.6 million was raised in a few months. For comparison, SLA Quebec raised $1.9 million in 2023.
PHOTO EDOUARD PLANTE-FRECHETTE, LA PRESSE ARCHIVES
In 2014, Montreal Mayor Denis Coderre responded to the many requests he received to take up the “Ice Bucket Challenge.”
“The sums collected in Quebec, Canada and around the world have helped us to better understand the disease and to fund essential research programs that have had a direct impact on the cause,” said Mr.me Cook. His organization offers services to support people who suffer from ALS, but also caregivers and family members with the goal that all those affected live better with the disease.
“With the awareness over the last ten years, there was an “initiative” to raise funds. This allowed us all, especially in Quebec, to really increase our programs and services and our annual contribution to research,” she continues.
Hope in research
The buckets of ice water represent the shock people experience when they are diagnosed with ALS. “People with ALS have made this connection, […] This reflection that “now you understand how we feel”,” explains Mme Cook.
It is estimated that by 2023, nearly 4,000 people were living with ALS in Canada. Each year, 1,000 Canadians are diagnosed with ALS and as many die.
There is no cure, but treatments can extend life expectancy by a few months. “It’s not enough,” says Mme Cook.
“We are working a lot with ALS Canada and the other provinces to raise awareness among government authorities to have faster access to clinical trials and treatments for people with ALS because time is of the essence,” she says.
Clinical trials help improve the quality of life for people with this disease. In 2014, there was only one treatment for ALS and now there are two. Researchers are optimistic that advances in recent years will one day lead to effective treatments.
“One thing that has happened since the Ice Bucket Challenge is the identification of several genes that are helping researchers better understand the disease. There is a lot of progress and advancement in research, which is a source of hope for families,” said Mr.me Cook.
CAPTURE ALS is currently recruiting participants with ALS or related neurodegenerative disorders as well as healthy individuals as part of a Canadian research project. Residents of Montreal, Quebec City, Edmonton and Toronto are welcome to apply. More details can be found at captureals.ca.