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ALS Ice Bucket Challenge Cheat Sheet

Love it or hate it, there is no escaping the social phenomenon of the ALS Ice Bucket Challenge. Whether it be the news feed full of hilarious (and not so hilarious) videos, the snarky comments about wasted water or the raised questions of what will be done with the money – everyone is talking about it.

So here is your cheat sheet of what you need to know, including (of course) my own biases towards the challenge.

1. What is the challenge?

Essentially the challenge is a simple dare, you have 24 hours to dump a bucket of iced water on your head (with video proof) or donate to ALS research (generally all are encouraged to donate even if they have done the challenge). At the end of your video you nominate others to complete the challenge and so the cycle continues.

2. What is ALS?

The experts are best left to explain this one. Straight from the official ALS website: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralysed.

Sounds horrible right? And the outlook is not positive for those diagnosed. Basically patients end up trapped in their own bodies and there is essentially no treatment. The one drug available (riluzole) only increases life expectancy by three months, with the typical prognosis three to five years.

And because only a few have to suffer, it’s largely ignored by big pharmaceutical companies.

3. Who is doing it?

In short, everyone. Including really famous people: Bill Gates, Mark Zuckerberg, Oprah Winfrey, Justin Timberlake, Jimmy Fallon and even Kermit the Frog to name only a few.

4. The criticism (and criticism of that criticism!)

Haters gonna hate. And everyone likes to throw in their two cents, even if it means bringing down what is at the core, a hugely successful charity promotion. And yes, it is clogging up my news feed too.

There have been a number of criticisms, a few main ones –

• The challenge encourages slactivism (people making videos but not actually donating) Please refer to point 5 for my response to this.

• The challenge is a waste of water. Not that those making this criticism go as far to question people’s showering habits or whether they leave the tap on whilst they are brushing.

• Why should ALS get all the love, there are plenty of other worthy charities that deserve attention. This one is hard to argue with, but it is also hard to prove that just because someone has donated to one cause that they will never donate to another.

• What will the ALS do with the money? Barbara Newhouse (the association’s CEO) has said the they will “invest prudently in helping people with ALS and their families and caregivers in the battle against the disease, while resolutely pursuing all avenues to extend, improve and ultimately save lives”

• Health risks. Dumping iced water on your head isn’t so great if you have a heart condition, or if you aren’t the most coordinated person. Unfortunately there have been a few seriously hurt from partaking in the challenge, and there have just been those that are a little bit special:

Of course, some people have chosen to raise their criticisms in relatively diplomatic ways. In Matt Damon’s video he chose to use recycled water (aka toilet water), rather than clean water. And really, as a cofounder of water.org (an organisation trying to close the gap on the 8 hundred million people in the world who don’t have access to clean drinking water) you can see where he is coming from. He uses his video to promote the fact that the water that people in western countries have in their toilets is actually cleaner than the water that most people in the developing world have access to. Well played Matt Damon, well played.

Or how about Lincoln Humphries, an Aussie news reader who gained attention from his response to his ALS nomination. “I’d like to nominate everyone everywhere who has more than what they need to donate what they can to the people who need it most because that’s what charity is about, not putting yourself through mild discomfort with a bucket of ice and water” and to finish up Humphries reminds viewers that “Ice is for keeping fresh produce fresh, beers cold and nipples hard”

5. The Results

According to the ALS website “As of Tuesday, August 26, The ALS Association has received $88.5 million in donations compared to $2.6 million during the same time period last year (July 29 to August 26). These donations have come from existing donors and 1.9 million new donors”

The New York Times has reported people shared more than 1.2 million challenge videos on Facebook between June 1 and August 13 and mentioned the phenomenon more than 2.2 million times on Twitter between July 29 and August 17.

The money, the shares and awareness all speak for themselves but I think the best example of the results and how this is impacting real people is hearing/seeing the reactions from sufferers of ALS. Anthony Carbajal, who was diagnosed at 26 has spoken out about how much the campaign has meant and acknowledged the criticism, “It wouldn’t be successful if we weren’t irritating a few people right? I promise your news feed will go back to cat videos and ‘Let It Go’ covers, but right now the ALS community has the main spotlight and for once in my entire life I’ve seen it in the forefront”

Watch his heartbreaking story and then see if you think the criticism is necessary:

Another sufferer, Angelina Fanous, in an article for Vice may have said it best, the worst part of the ice bucket challenge is the people criticizing it.

For me, the most unfortunate thing for us southern hemisphere-ers is that this phenomenon blew up in our winter! But a small price to pay for contributing to such a worthy cause.

Jane Clinch, Digital Director Vizeum Sydney