Canada joins huge international ALS study

A DNA strand is shown in this illustration. (suravid / shutterstock.com)

Canada has become the 17th country to join a large international study that hopes to find out why some people develop ALS.

On Tuesday, the ALS Society of Canada, along with provincial ALS societies across the country, linked up with Project MinE. The group helped discover a gene linked to ALS, or Lou Gehrig’s disease, thanks to funds raised through the wildly popular Ice Bucket Challenge.

Project MinE, which started in 2014 in the Netherlands, has been teaming up with countries around the world to find the genetic causes of the disease and ultimately find a cure.

More than 200,000 people worldwide, including around 3,000 Canadians, are living with ALS.

ALS is a degenerative disease in which the nerve cells that control the body’s motor functions begin to die, leaving the person paralyzed. The average life expectancy of ALS patients after diagnosis is three years.

Very little is known about the cause of the disease and there is still no treatment.

Researchers believe that ALS is a combination of genetic mutations. Since first discovering one gene linked to the disease in 1993, they have been trying to piece together the rest of the puzzle.

That’s where Project MinE comes in.

It plans to map the complete DNA profiles of 15,000 people with ALS, along with 7,500 people who don’t have ALS (controls) to make a database of genetic information on the disease. They will then compare the data from the ALS participants and the non-ALS participants and hopefully find the genetic mutations linked to ALS. Once they find those, they can identify possible treatments.

The ALS Society of Canada is giving an initial $150,000 to the project and is asking the federal government to support Canada’s ongoing participation in the initiative.

According to the ALS Society of Canada, federal funding would mean the stored DNA profiles of Canadians with ALS could be contributed to the project. Canadians living with ALS would also be able to contribute a DNA sample to Project MinE if they want.

Canada is also contributing four research experts from various institutions across the country. Project MinE will also be the first-ever cross-Canada collaboration.

“What’s special and powerful about Project MinE is that it brings together different members of the ALS community – researchers, clinicians, and people and families affected by ALS – who are collaborating within Canada as well as internationally to better understand how ALS can be treated effectively,” said Tammy Moore, CEO of ALS Canada, in a statement. “We see Project MinE as a Canadian and global legacy that will help to develop effective treatments for ALS for the first time ever.”