MONTREAL - Patients with neuro-muscular diseases, such as Lou Gehrig's Disease or pediatric muscular dystrophy, have a new powerful tool at their disposal.
A national registry was launched Thursday that will help connect patients and researchers working towards therapies and cures from across the country.
Denis Heath, who lives in the Eastern Townships, was diagnosed with ALS in 2009.
"Well the arms are pretty much useless and the legs are weak," he says.
"I can still walk - limited distance but I can still get around."
He takes it day by day and he knows it's all he can do.
"Even before I knew I had it, you realize this is a disease that's been around a while and there's no sign of a cure - nothing new."
But now there's a unique opportunity to move research forward. This new national registry is one piece of the puzzle.
Dr. Angela Genge of the Montreal Neurological Institute says it's designed to collect data about patients with more than 40 diseases that affect muscles and nerves, like ALS.
"One of the most important first questions is where people live," she says.
"We need to know where ALS clusters. Or is it uniformly spread across the country. We don't even know that yet."
The registry includes 17 cities in Canada from coast to coast. The Montreal Neurological Institute will be coordinating adult patients here in Montreal.
Genge says 90 percent of ALS cases are sporadic, with no known cause.
Tony Proudfoot suspected environmental factors may have played a role in causing his disease. Proudfoot died in January, but not before he successfully raised the profile of the illness and the need for research.
"We will be able to start by identifying the patients, who they are, how old they are, where they live what kind of work they do and from that we can build and possibly determine whether there are environmental factors." Genge said.
