We found out yesterday the man who served as the inspiration for the dreaded (I say that because I did it in front of thousands at a Goldeyes game) “Ice Bucket Challenge” supporting ALS passed away earlier this week. Anthony Senerchia Jr of Pelham NY was 46 and leaves behind his wife Jeanette and his 9 year old daughter Taya. He’d been battling ALS for 14 years before finally succumbing on Monday.
READ MORE: Man who helped inspire Ice Bucket Challenge dies from ALS at age 46
I pointed out the beginnings of the challenge on 680 CJOB this morning and the fact it didn’t take long at all for the thing to catch fire on social media especially when notable celebrities like Jimmy Fallon, Leonardo Dicaprio, Bill Gates, Mark Zuckerberg and even Homer Simpson became involved. It began in mid-July of 2014 and by the end of August of that same year, over 100 million dollars had been raised for researchers to look for some form of treatment and, maybe someday, even a cure.
I’m not sure if you’re very well acquainted with ALS. Before the ice bucket challenge came about, ALS was a thing that maybe you’d heard about, but most people I spoke with didn’t really know what its affects were.
A former colleague of mine died from the disease a few years back and watching him go was a two year experience in grief and pain. There were also happy, loving moments as well but looking back, what a terrible, terrifying and humbling experience it was for all involved.
READ MORE: What is ALS? The disease behind the ice bucket challenge
ALS is a motor neuron disease that will gradually paralyze a person because the brain is no longer able to communicate with the muscles that we’re normally able to move at will. Over time the muscles break down causing the person living with the disease to lose the ability to walk, speak, eat, swallow and eventually breathe. Approximately 80 per cent of people suffering from ALS will die between two and five years of diagnosis.
From a personal standpoint it is very difficult to watch. A once vital friend is now left in a wheelchair only able to move very slightly but their brain is still as bright and active as ever. It is heartbreaking.
According to ALS.ca there are about 3,000 Canadians currently living with ALS. Each day in Canada 2-3 people will die from ALS and the risks of developing it is 1 in every 1,000 people.
What’s the cause? There is no one single cause. ALS is recognized as having multiple interacting causes that could be based on genetics plus the possible contribution of environmental factors. Recently a number of genes have been identified as playing a role in the development of ALS. Through research, more is being learned about ALS and the multiple factors that may trigger it. The monies raised from the Ice Bucket Challenge have contributed greatly to these recent discoveries.
Still they are far far away from any kind of vaccine or cure so the more money researchers have, the better chance this dread disease will be obliterated.
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The Ice Bucket Challenge was a viral phenomenon in 2014. It still exists, albeit, to a much smaller extent today. People were still doing it in the summers of 2015, 16 and 17 to keep the awareness out there.
Is this the kind of thing we can keep going annually? Well, we have the Terry Fox run every year, there was the Muscular Dystrophy telethon that raised millions every year from 1966 until 2014, and there are several local events for great causes in almost every city in the world that have turned into annual events.
I’d suggest this coming summer we attempt to revive the Ice Bucket Challenge to 2014 levels. All it takes is a bucket of very cold water, a smart phone and a social media account. You’d be surprised at the good you’ll be doing, even if you think you’re just involving yourself with some lame “slacktivism.”
Way to go Mr. Senerchia. You were and still are an incredible inspiration.