Global ALS research
Diagnosed with ALS in 2015, Chris McCauley is now part of a worldwide effort searching for the root causes of the disease. MARK WANZEL/PHOTO
Barrie’s Chris McCauley is hoping to be part of the cure of amyotrophic lateral sclerosis (ALS).
The former Pittsburgh Penguin prospect and European professional hockey defenceman is now confined to a wheelchair with assisted breathing support.
“I am completely dependent on others for everything,” McCauley said. “I would not be alive if I didn’t have such great family support.”
While most people in the final stages of ALS shy away from the public eye, McCauley won’t because he says he has an agenda.
“A lot of people aren’t able to speak at this point. It’s why I want to advocate for people with the illness,” he said.
“I have to use my voice to let people know about the new medical science discoveries that will help produce new therapies to relieve suffering for people with ALS and their families,” he added.
According to the ALS Society of Canada, it costs a family between $150,000 and $250,000 after a family member is diagnosed with the disease.
McCauley was diagnosed with ALS in Costa Rica by a neurologist during an emergency hospital visit while visiting the Central American country a few years ago.
Now the 54-year-old is one of approximately 3,000 Canadians living with ALS.
McCauley has donated a sample of his DNA to a new international consortium that is searching for the root causes of the disease.
Canada is the 17th country to join the international partnership called Project MinE.
“The world is getting better at collaborating,” said David Taylor, a researcher with the ALS Society of Canada.
Taylor said the worldwide ice-bucket challenge fundraiser in 2014 afforded countries the ability to pool their financial resources together to co-operate on a large-scale research project.
Over the next few years, the project which will map the DNA profiles of 15,000 people with ALS and 7,500 control subjects to establish a globally accessible resource of human data for scientists to understand the genetic disposition of people with ALS.
“What’s special and powerful about Project MinE is that it brings together different members of the ALS community – researchers, clinicians, and the 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 the ALS Society of Canada.
“We see Project MinE as a Canadian and global legacy that will help to develop effective treatments for ALS for the first time ever,” she said.
Canada’s goal is to contribute up to 1,000 DNA profiles to the project. Each DNA test costs between $2,000 and $3,000 and the ALS Society has approached the federal government for additional funding.
People with ALS suffer a gradual paralysis, leaving them without an ability to move, talk, swallow and eventually breathe.
While almost 80% of people with ALS die within two to five years of their diagnosis, another 1,000 Canadians are newly diagnosed each year.
Project MinE was founded in 2013 by Robbert Jan Stuit and Bernard Muller, two entrepreneurs from the Netherlands who are living with ALS. The ultimate goal of the project is to identify genes that are associated with ALS and determine pathways to develop treatments.
McCauley said Project MinE fills him with hope.
“To me, Project MinE is a great example of using the expertise and technology at our disposal as a society to try to solve a problem and alleviate suffering,” McCauley said. “I think of others who will come after me and like me, lose the bloom of their health so insidiously. Project MinE could help to make things for them.”
Four of Canada’s top ALS geneticists in Quebec City, Vancouver, Toronto and Montreal have joined the international consortium to collect the data and assist in the co-ordination of efforts the information will reveal.
The Canadian researchers believe the geographical areas they’re representing across the country will offer a strong balance of DNA samples.
“In the vast majority of ALS cases, the precise cause of the disease is unknown – although research is increasingly demonstrating that genetics play a big role,” said Dr. Guy Rouleau, director of the Montreal Neurological Institute and Hospital at McGill University.
“Project MinE is an unprecedented opportunity for the global ALS research community to answer critical questions about the genetic signature of ALS and biological changes that can trigger its development – in turn making it possible to develop effective treatments.”