Bucket challenge good for ALS awareness

I’m technically challenged. I don’t tweet on twitter. I also don’t upload personal videos onto YouTube though we often joke about the humorous opportunities to “go viral” that have been missed in recent years. The talking dogs, for example.

So, it’s unlikely I’ll ever take the Ice Bucket Challenge and join the multi-millions of people doing it, or not doing it, to raise money for amyotrophic lateral sclerosis (ALS) research.

How the Challenge works is a bit confusing. After all, the phenomenon just sort of took off on social media earlier this summer without any clear organizational structure. An article about it on Wikipedia, the on-line encyclopedia, says the “rules” are that anyone challenged to pour a bucket of ice water poured over their head has the option to decline and donate $100 to charitable organizations funding research to learn more about the fatal, degenerative, neurological disorder; or they can accept the challenge, have themselves videotaped doing it, and donate $10. But most people are donating $100 or more regardless.

So far the fundraising results have been amazing, especially for the American ALS Association. It has been, well, flooded with ice bucket-challenge donations, totaling $31.5 million as of this writing. That’s a number that doubled this past week in the space of a couple of days. It’s likely well over $50 million by now at that rate. Usually by this time of the year the association has raised about $1.8 million.

(It gives you some idea of the power of social media as it takes on a life of its own. There’s never been anything like it. It’s indeed a force to be reckoned with for good, and unfortunately, for evil. I think from now on it will have a huge impact on the course of human events. The world, as Marshall McLuhan predicted, is truly becoming a “global village.”)

The Ice Bucket Challenge is hot in the U.S. but also taking off in Canada, where none other than Toronto’s infamous Mayor Rob Ford, accepted the challenge, then issued one to his favourite late-night show host Jimmy Kimmel, and Prime Minister Stephen Harper. Harper declined, opting instead to donate.

I can’t help but wonder how much of the money being raised in Canada on behalf of ALS is going south. By mid-week ALS Canada donations had reached $533,966, with a goal of $1 million.

Like I say, I’m not likely to take the challenge for reasons of technical incompetence if I happen to get one, opting instead to do a Harper. But I don’t agree with some observers, including one academic at Cambridge University I heard being interviewed on the radio this morning who argued such things have several negative consequences. For example, he said they give not-so-good celebrities who take part in such high-profile stunts on behalf of charity the opportunity to show themselves off as better people than they actually are. Hmmm.

As well, he said, since the percentage of income people donate to charity has stayed the same for decades it means other worthy causes will invariably  get less in the world of highly competitive charity fundraising.

But others spoke of the huge boost in public awareness ALS is getting as a result of the Challenge, and that’s a good thing because it was lacking.

I agree. Speaking personally, it’s prompted me to think about ALS again, and to be reminded that my father died of the disease 44 years ago almost to the day.

He and his second wife Daisy and their two then-infant children, my brother and sister, Susan and David, had emigrated to the U.S. from Toronto and were living in Los Angeles. I heard much later from my siblings that our Dad was pushing a grocery cart across the parking lot of a supermarket when he suddenly collapsed. He was diagnosed with ALS and soon ended up living in a Los Angeles nursing home. The man once described by a Canadian Army doctor years earlier as a “fine specimen of a human being” became an emaciated shadow of what he had been as his muscles atrophied. He died trying desperately to get his last breath.

It is indeed a terrible disease. It’s also known as Lou Gehrig’s disease after the great American baseball player who sadly announced his retirement at Yankee Stadium in 1939 before a capacity crowd. The player they nicknamed “The Iron Horse” because of his durability, power hitting, and all-star play as a first baseman set many records in his 17-year career, but finally just couldn’t play the game anymore.

Not since that day has ALS got the attention it needs, to hopefully help researchers find a cure.

An ALS Canada fact sheet says there is “no effective treatment or cure” for ALS. “Research is truly the only hope.”

The most recent research in the U.S. has found certain genetic anomalies in people who get ALS.

My elderly mother has always remembered how, when he joined the army during the Second World War, my Dad went out one morning to get a whole set of vaccinations in one day before he went overseas. He developed a huge, butterfly-shaped rash on his back, on either side of his spine.

She thinks, and I agree, the bad seeds of his ALS were planted that day. He was only 47 when he died, and had so much more to do.

Originally published in The Sun Times in 2014

 

 

One thought on “Bucket challenge good for ALS awareness

  1. Hi Phil , Dad suffered greatly those last few years. I remember those days in the nursing home, visiting him daily and sharing lunch with him and talking to him, while he tried making life as normal as possible for his children under unnormal circumstances. He was there for us till the end. Your sister Susan.

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