As the viral fundraising campaign ALS Ice Bucket Challenge sweeps the globe, some of those living with the disease say it’s raising money for a worthy cause and keeping the horrible disease in the public consciousness.
The challenge involves donating money and recording a video of yourself having ice water dumped over your head, then nominating three other people to do the same.
Darrell Bach of Sydney was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2011.
Bach and more than 20 of his co-workers at Seaside Wireless in Sydney took part in the challenge Friday morning.
He had something to say to people who think the challenge is nothing more than internet slacktivism.
"To those not familiar with the disease they might be thinking, ‘Oh, another ALS video,’ because, through no fault of their own, they have no emotional connection, they're not aware, and they just think ‘Oh there's another of those silly videos.’ But let's face it, I think even negative publicity is still raising awareness and is putting ALS in people's minds," he said.
ALS, also known as Lou Gehrig's disease, is a fatal disease that causes muscle weakness and atrophy throughout the body due to the degeneration of the upper and lower motor neurons. People who are affected by the disorder eventually lose the ability to initiate and control all voluntary movement.
Bach is a systems analyst with Seaside Communications. He's still able to work but the disease is creeping into his routine.
“Simple things, I can't put a shirt on myself. I can't lift my arms over my head. I've fallen three times.”
McNeil takes up the challenge
Premier Stephen McNeil also took the challenge and posted a video to YouTube Friday.
Assisted by MLAs Zach Churchill and Geoff MacLellan — who, incidentally, had to stand on each other's shoulders just to pour the bucket over the six-foot-four-inch tall McNeil — the premier took the challenge after being nominated by his daughter Colleen.
"There’s a cabinet shuffle coming," joked McNeil after Churchill and MacLellan soaked him.
There is some debate about who first came up with the challenge, but according to ALS Canada, it was the brainchild of a 29-year-old Massachusetts man named Peter Frates who lives with the disease.
Regardless of its origins, it has become an internet sensation and a successful charity campaign, raising more than $15.6 million for the ALS Association as of Monday — that’s an eight-fold spike over the $1.8 million donated during the same period last year.
About 3,000 Canadians are living with the disease.