2024-08-17 15:32:00
Ten years ago, an interesting challenge was launched in the United States to raise awareness about amyotrophic lateral sclerosis (ALS). The “Ice Bucket Challenge” quickly went viral on social media. This campaign makes it possible to advance research and better understand the disease.
ALS is the most common motor neuron disease. It damages the body’s nerve cells, causing voluntary muscle atrophy, which degenerates and weakens over time.
ALS eventually spreads throughout the body, gradually affecting all voluntary muscles up to those involved in breathing, causing breathing problems.
“After being diagnosed with ALS, 80 per cent of patients have a life expectancy of two to five years. The rate at which a person loses muscle function varies greatly,” explains the SLA 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. “In August 2014, three ALS patients in the United States challenged themselves to pour ice water on their heads and challenged three other people,” said Claudine Cook, general manager of SLA Quebec. Participants are invited to donate.
Ms. Cook will never forget this moment in her career. “We are very grateful for the impact of this event, which was a gift from God to our career,” she recalled.
In 2014, donations broke records. Canada raised $17.2 million that year. Of that amount, $11 million was invested in research in Canada, with the remainder allocated to programs and services for ALS patients.
In Quebec, the Ice Bucket Challenge raised $2.6 million in just a few months when it was launched. By comparison, SLA Quebec raised $1.9 million in 2023.
“The funds raised in Quebec, Canada and around the world allow us to better understand this disease and fund important research projects that have a direct impact on it,” stressed Ms. Cook, whose organization provides services to Supporting people with ALS as well as caregivers and family members, with the goal of making life better with this disease for all affected.
“As awareness has grown over the past decade, there has been a drive to raise funds. It has allowed all of us, especially those in Quebec, to really increase our programs and services and our annual contribution to research,” she continued said.
Hope it’s under study
A bucket of ice water represents the shock people experience when they are diagnosed with ALS. “The people affected have already made this connection, […] “Now you know how we feel,” Cook said.
It is estimated that by 2023, nearly 4,000 people in Canada will be living with ALS. Each year, 1,000 Canadians receive this diagnosis, resulting in many deaths.
There is currently no cure, but treatment can extend life expectancy by several months. “It’s not enough,” Ms. Cook said.
“We’re working a lot with ALS Canada and other provinces to raise awareness among government authorities to get clinical trials and treatments to ALS patients more quickly because time is running out,” she said.
Clinical trials make it possible to improve the quality of life for people with this disease. In 2014, there was only one treatment for ALS; now there are two. Researchers are optimistic that advances in recent years will one day lead to effective treatments.
“One of the things that has happened since the Ice Bucket Challenge is the identification of several genetic genes that are helping researchers better understand the disease. There are a lot of advances and developments in research, which is a source of hope for families.
CAPTURE ALS is currently recruiting participants with ALS or related neurodegenerative diseases as well as healthy individuals in the Canadian study. Residents of Montreal, Quebec, Edmonton and Toronto are welcome. More details on the website cacapitals.ca.
The Canadian Press’ health content is funded through a partnership with the Canadian Medical Association. The Canadian Press is solely responsible for editorial choices.
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