A viral sensation from 2014 has helped garner major results in the fight against a deadly disease.
The ALS Ice Bucket Challenge saw millions of people posted videos in which they dunked themselves with ice water and challenged others to do the same. Among those who took part were numerous celebrities and politicians, including Justin Trudeau.
“ALS is a terminal disease, the life span is between two and five years,” said ALS Society of Quebec Executive Director Claudine Cook. “There are currently 600 people living with ALS in Quebec.”
Globally, the challenge raised more than $100 million for research, with $2.7 million of that coming from Quebec.
Researchers who received some of that money have identified a new gene, NEK1, that has a connection to ALS.
“It’s a new gene that’s been identified in both patients that have a family history and those who don’t,” said Christine Vande Velde, an ALS research at the Universite de Montreal.
The gene affects three per cent of people with the disease, a number Vande Velde calls significant. She said the discovery could lead to new therapies in the future and that the money raised by the ALS society are vital.
“It takes a lot of money to be able to look at the DNA, the genetic composition of a large group of patients,” she said. “I believe here they looked at over 1,000.”
While the discovery is not a cure, Cook said it is still good news for those living with the disease.
“Hope. It gives hope for the whole ALS community that there’s active research taking place,” she said. “There are breakthroughs and they will solve this one day.”
The money isn’t the only benefit of the Ice Bucket Challenge. Cook praised the viral videos for helping raise awareness of the disease.
“People say Lou Gehrig’s Disease, now we can say the Ice Bucket disease and people have a certain awareness of it,” she said.
