ALS is a crippling disease with no cure, that affects thousands of Canadians. So what is being done?
The ALS Society of B.C. is launching a month-long fundraising campaign. On Monday, Paul LeBlanc, president of the ALS Society of B.C., joined The Jon McComb Show to discuss what the organization is doing for the campaign and what the illness does to patients and its families.
ALS, which is officially known as Amyotrophic Lateral Sclerosis, is a degenerative nerve disease that gradually immobilizes people because of the brain’s inability to communicate with the muscles of the body. Over time, people with ALS will lose their ability to talk, walk, eat, swallow and breathe.
The fundraising mission includes the PGA of B.C. Golfathon for ALS and the BC Walk for ALS, but what LeBlanc is really hoping for is for people to go to the ALSBC website and make any sort of donation possible.
LISTEN: ALS Society of B.C. launches campaign
“If they can throw us a few dollars monthly or just a one-shot, it makes a huge difference,” LeBlanc said.
LeBlanc said one of the difficult aspects of assessing the illness is that it differs on a case-by-case situation, and predicting how long someone lives with the disease is extremely difficult.
“I know people who were diagnosed and passed within a year and a half, and my own mom lived with the disease for ten years,” LeBlanc said. “Every story is different.”
A major service that they are looking to raise funds for is their equipment loan program, which is a service that provides patients medical equipment to help cope with their daily challenges.
“As people go through their own personal journey with ALS, which is different for everyone, we can provide them with things they need at each stage in their process,” LeBlanc said. “As they move along, we can exchange those for things that are more suitable for them later.”
LeBlanc said when his own mother fought the disease in the 1980s in Nova Scotia, there was not as much support in the area as there is now in B.C.
“We did a fundraiser for a speech computer for ourselves,” LeBlanc said. “But we were mostly on our own in those days.”
Awareness about the illness skyrocketed in 2014 when the ALS Ice Bucket Challenge took over social media. The internet phenomenon provided a huge boost to their research programs, but LeBlanc the greatest benefit was the amount of awareness it created.
WATCH: Paul LeBlanc does the ALS Ice Bucket Challenge
“I remember when I talked about ALS and having to explain what it was,” LeBlanc said. “People get it now and they understand what it is.”
Finding a cure for the devastating disease is still a struggle for researchers and LeBlanc recognizes there is a long way to go. However, he believes the continuous expansion of research is significant.
“I still think that the more different areas that we can try, the more likely that someone will stumble upon something,” LeBlanc said.
For more information on the ALSBC, visit their website.