Newsmaker: ALS Ice Bucket Challenge

Social media streams are flooded with videos of people attempting the Ice Bucket Challenge and while it may seem gimmicky to many, it has gone on to raise millions of dollars for research and even more in awareness.

Dubai-based journalist, Imthishan Giado, has no time for anyone more concerned about water “wastage” than raising money and awareness for ALS by tipping buckets of icy H2O over their heads and posting the resulting videos onto Facebook. Woe-betide anyone who voices any criticism because he’s a vocal supporter of the craze that’s swept the world in just a few weeks and here’s why: just two years ago his now-59-year-old mother discovered she has the disease.

“You should see her face whenever she sees one of these videos,” he says. “It just lights up. And anyway, what’s a bucket of water compared to the good that this is all doing?”

Giado himself took what’s come to be known as the Ice Bucket Challenge on Sunday night. He nominated four others to follow suit and went public with the fact that he’s directly affected by this most devastating illness. But a month ago, if he’d told anyone his mother has ALS, or that there’s a very real possibility that he himself could be struck with it at any stage in his life, very few people would have had any clue what he was talking about. Not anymore.

You have probably been dreading logging on to Facebook for the past two or three weeks for fear that a “friend” has nominated you to accept the challenge: in the name of ALS, either tip, or have tipped, a bucket full of ice-cold water over your head. Accept the challenge, douse yourself with liquid freeze and donate US$10 (Dh37) or, if you decide to forgo the ritual humiliation, you dig deeper to the tune of $100 as a forfeit, donating the money straight to the ALS Foundation.

As with so many of these viral obsessions, it’s difficult to pinpoint exactly where it all started. Last year, the “Cold Water Challenge” was popular in the north of the United States and involved jumping into a body of cold water or donating to charities such as Cancer Research, with videos of the feats being posted online. This, in turn, evolved to include dousing people with fire hoses – perpetrated by actual firefighters in New Jersey, who ended up being reprimanded for unauthorised use of fire department equipment.

A tipping point (sorry) came on June 30 this year, when presenters on an American golfing television show, Morning Drive, highlighting the ongoing phenomena of drenching people with cold water, carried out an Ice Bucket Challenge live on air. Two weeks later, on NBC's The Today Show, presenter Matt Lauer took up the challenge after being nominated by golfer Greg Norman. Suddenly the whole of America knew about it and the inevitable happened – just imagine what Bob Geldof could have achieved if Facebook existed in the time of Live Aid.

Former baseball player, Pete Frates, began tweeting about the Ice Bucket Challenge and this is where the ALS angle came to the fore. Frates was diagnosed with the disease two years ago and has been tireless in his efforts to raise both awareness and funding for research, helped enormously by his close friend, 27-year-old American philanthropist, Corey Griffin, who is widely recognised as a co-founder of the challenge.

Tragically, just as the challenge was getting into its stride, becoming the worldwide juggernaut it still is, Griffin's own life ended when he drowned while diving off a wharf on the coast of Nantucket in Massachusetts. According to a report in The Independent, just hours before his fatal accident, Griffin had raised $100,000 for ALS research in a charity fundraiser.

The reason for using iced water in the buckets is simple: for just a second or two, the person soaked gets to experience what it’s like to be literally unable to move a muscle despite really wanting to.

ALS, motor neurone disease, Charcot disease, Lou Gehrig’s disease – call it what you will but amyotrophic lateral sclerosis (to give ALS its full title) is something that is currently incurable and sufferers live, on average, only 39 months after initial diagnosis. Nearly 6,000 new cases appear annually in the US alone but it’s still something most of us know very little about. If you’re familiar with Professor Stephen Hawking then you’ll at least know how it affects the human body because he has had it since he was 21 years old. Having it hasn’t stopped him from marrying and divorcing twice and Hawking is now 72 but don’t, for a second, think his case is anything other than exceptional because, for most, death is swift and undignified.

While the world has gladly taken to it, the craze has not been without its critics. Former Canadian diplomat, Scott Gilmore, was scathing about it on the website: “The marketing gimmick is very clever,” he wrote earlier this week. “It is short, immediately understandable, and like the most popular forms of slacktivism, it is easy to do, entertaining to watch, and narcissistically self-promoting. Every screen on our desks, on our walls and in our hands is filled with celebrities, neighbours and politicians showing off their earnest compassion and occasional humour.”

He goes on to liken the ice bucket’s ubiquity to that of other “famous charitable stunts like Movember, Livestrong, or the infamous Kony 2012” and notes that it’s “a great way to raise money but it is a horrible reason to donate it. We, as individuals and as a society, have finite resources to donate to medical research and other worthy causes.”

He wasn’t finished there, either. “ALS research is not an especially great need in public health. It is classified as a rare disease and, thankfully, only about 600 people die from it every year in Canada. That sounds like a lot, but that is not even close to the top 20 most fatal diseases.”

Perhaps Gilmore might have felt differently about things if, like Giado, he had been immediately affected by the disease but, at the end of the day, it’s entirely up to each one of us what we do with our ice buckets and our own money.

And it would appear that, in the past few days, the Ice Bucket Challenge has begun to morph in a somewhat organic fashion. Some people would rather raise money for research into diseases that have personally affected them in some way, or for charitable organisations that care for children or victims of abuse. Again, there are no hard and fast rules to this thing and any money at all for good causes is better than none.

“ALS just isn’t a profitable disease,” says Giado. “When it comes to drug company research and allocation of funding, an illness that affects two people in every hundred thousand is never going to get the attention that it should and that’s why I think this latest fad is such a great thing. It has opened people’s minds to the illness, people are now aware of it and the money that has been raised will go towards research into possible cures and treatment, and it will help the families of those who suffer from it.”

He says that since his mother’s diagnosis, family life has irreversibly changed. “There’s no respite – our house, our lives, everything is centred around mum now because she is utterly dependent on help from others. Before we found out, I had been preparing to set up home on my own but not now – I have to be there as my dad couldn’t cope on his own.”

Having been given just six months to live after the initial doctors’ reports, she’s already outlived their prognoses threefold. “It’s odd but she’s doing things – small things – that should be impossible, like making tiny movements with her fingers. But every day she wakes up and is disappointed she made it through the night.”

And that’s perhaps the most cruel aspect to the disease. While the body’s muscles rapidly waste away, the brain is as good as new. “Mum can still speak,” Giado says, “but every single word has to be spelt out, letter by letter, and she stopped being able to write ages ago. You need total patience but it’s vital to have that because those who have ALS know exactly what is going on around them.”

According to CNN, at the time of writing, the ALS Association has raised $94.3 million – all within a few weeks and all because of the Ice Bucket Challenge. Where and when will it all end? Giado reckons it won’t be long. “Another couple of weeks, maybe a month, and then we’ll forget about ALS and move onto something else.”

But long after the Facebook videos have disappeared into obscurity and the nominations have ceased, those affected by this terrible affliction will be benefiting, not only from the tens of millions of dollars raised by people having a bit of a laugh, but also from the fact that the entire world now knows just a bit more about it. If you’ve so far escaped being nominated, you’re either not a user of social media or, more likely, your time will come soon enough.

Anyone who’s anyone, from former presidents to the world’s wealthiest businessmen and women and the man and wife who live next door to you will have done it or know someone who has. And, when you inevitably tip that freezing-cold water over your head, you might want to spare a thought for Mrs Giado and thousands like her who, although they might not be able to give you a round of applause, will definitely be cheering from inside.

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