The ‘ice bucket challenge’ is a great example of how social media can elevate a cause to a global stage – but what happens when the message is lost in translation? If you’ve spent any time on social media in the last few weeks you’re probably aware of the ‘ice bucket challenge’ – a viral phenomenon where people film or photograph themselves having a bucket of icy water dumped on their heads, and then post it online nominating others to do the same.
Hordes of celebrities from Bill Gates to Oprah Winfrey and Justin Bieber have joined in the challenge, which is meant to raise awareness of amyotrophic lateral sclerosis or ALS, a generative and incurable nerve disease.
The only problem is in Australia, as in many other parts of the world, it’s not called ALS – it’s called motor neurone disease, or MND. Turns out an awareness campaign isn’t quite as useful when it’s raising awareness for the ‘wrong’ thing.
On Sunday, America’s national ALS Association announced it had received more than $US13 million in donations since July 29, compared with $US1.7 million during the same period last year, thanks to publicity gained from the ice bucket challenge.
Here in Australia the situation is a bit different – and it’s all down to those three little letters.
National Executive Director of MND Australia Carol Birks said while donations do appear to be up, the ice bucket challenge has ironically turned out to be something of a challenge for the organisation itself, which is now trying to rebrand the campaign for an Australian audience.
“[The name difference] is an issue,” she said.
“The UK, Scotland, some Asian countries, South Africa, New Zealand, they all call it MND. Even in the States they have an issue because a lot of people only know it as Lou Gehrig’s Disease, they don’t even know about ALS, so the message is not always getting through.”
Not only do the ice bucket challenge videos and photos themselves refer to ALS instead of MND, but so has much of the Australian media coverage of them, leaving MND Australia to try and correct the information through their own PR efforts.
“I did actually just ring up one radio station here that was talking about it to highlight that we don’t call it ALS in this country, that it’s MND, but there wasn’t a lot of interest,” Ms Birks said.
“It all seems to be becoming about the ice and the water and not the cause. We’re hoping to refocus that a bit.”
That many of the ice bucket videos seem to focus on the prank instead of on the disease – or indeed, on the need for donations – has been one of the main criticisms of the campaign from the beginning. In fact the original premise of the challenge was to donate $100 to ALS research to avoid being doused in ice water, something which fell by the wayside as the novelty of the thing took off.
It’s another aspect of the campaign Ms Birks says MND Australia is trying to change on a local level.
“Raising awareness is important but obviously raising awareness doesn’t help us to defeat this disease,” she said.
“We also need to be linked to that donation aspect, and so when we’ve been doing the challenge ourselves we’ve said we’re making a personal donation and we call on other people to do the same. We’re trying to change the message to make a donation as well as do the bucket challenge.”
Despite the local branding issues Ms Birks said overall the ice bucket challenge had been “amazing” for MND awareness, with information only a mouseclick away for those willing to Google it.
Ultimately she said while donations are always welcome, spreading the message is just as valuable – as long as it’s the right message.
“I think it’s important that when people do it in Australia they say ‘this is for supporting people with motor neurone disease’,” she said.
“You don’t necessarily have to make a donation – there’s a message in there and I think that’s just as important.”
Fundraising group Laugh to Cure MND is holding a Guinness record attempt ice bucket challenge at Melbourne’s Etihad Stadium this Friday, August 22. Click here for more details, to donate or to register.