Amyotrophic lateral sclerosis, known as ALS, is a nervous system disease that affects nerve cells in the brain and spinal cord. ALS causes loss of muscle control and the disease becomes worse over time. As of today, there is no effective treatment for this neurodegenerative disease that approximately 400 people in BC are currently living with.
This will be the second year qathet region resident Geri Anderson has organized the Move to Cure ALS - Powell River fundraising event at Willingdon Beach Park. For Anderson and her brother Rick, who recently moved to qathet, it's personal. Rick was diagnosed with the life-altering condition eight years ago.
"We will meet on Saturday, June 22, at 9 am, at the Willingdon Beach parking lot, and then walk past the Westview ferry terminal to the Coast Guard station and back," said Geri. "Last year was beautiful weather, and we had 63 participants show up for the walk."
Rick said he remembers it was the year the Ice Bucket Challenge became a global phenomenon. Around that time, he noticed some physical changes that led to years of medical tests and finally a diagnosis approximately two years later.
"I used to walk a lot more than people think of walking and I developed a flat foot," said Rick. "I had other symptoms like tightness in my legs."
He said it took a while for the medical community to understand what was going on, but once he was on the track for a diagnosis, the medical team had its full attention on him, he said.
"It's tremendously life-changing," added Rick. "I don't work anymore, I don't drive anymore. So many adjustments, it's a different life entirely."
He said he's glad he moved to the region to be closer with his family. He also likes peace and quiet.
"You're facing a hard one [when diagnosed with ALS]," said Rick. "You need to have friends and your family around for sure; you don't want to be alone.
"It's the worst kind of news. It may sound trite to say, but just make the best of every day, you just have to do it."
According to ALS Canada, research is at a time of unprecedented momentum: "There has been more progress in the last five to seven years than in the last century and many of the top ALS researchers in the world believe the scientific community is now poised to find treatments that can significantly alter the course of the disease, and that lack of funding is the only limitation."
Geri said she was overwhelmed with emotion to have so many people join her on the walk in 2023.
"What shocked me last year was meeting all these people who have lost someone to ALS,” she added. “Most have lost them within two years of diagnosis, really quick.”
Although for Geri and Rick his diagnosis is not a happy one, she is relieved her sibling is still alive, eight years later.
"My brother is very fortunate," said Geri.
Recently, the ALS Centre at GF Strong, University of British Columbia, has been actively doing clinical research and has consolidated a partnership with the ALS Society of BC to provide an outreach clinic program for areas of the province difficult to reach for disabled patients.
Move to Cure ALS is the annual signature fundraising event for the ALS Society of British Columbia, which brings together family and friends in support of ALS during the month of June at various locations around BC and Yukon.
Geri said there will be a 50/50 fundraiser at the June 22 event. If people are interested in joining the walk, they can register and join "Team Six" by going to alsbc.ca/get-involved/events, and clicking on “Go to the event” under: The Move to Cure ALS.
All participants receive a free t-shirt.
Join the Peak’s email list for the top headlines right in your inbox Monday to Friday.
