Ice Bucket Challenge funds ALS breakthrough

Ice cold: Daniel Ricciardo took part in the challenge ahead of the Belgian Grand Prix. © PA

Cynics called it ‘slacktivism’, ‘problematic in almost every way.’ But two years on, the ice bucket challenge has funded a medical breakthrough. Can social media change the world after all?

Bill Gates pulled on a rope to bring a bucket of icy water down onto his head. Taylor Swift got a whole gang together, and donated $100 for each of them. Justin Bieber nominated President Obama to be next. (He declined.) In the late summer of 2014, there was no escaping the ice bucket challenge on social media — that is, until everyone eventually got bored and moved on.

But first, the viral videos raised around $115m for the ALS Association. And this week scientists announced that the money has helped them to discover a new gene variant which is linked to the disease. Now they can start studying it in more detail — and maybe even find a cure.

ALS is a rare disease which affects nerve cells in the brain and spine. As it advances, it weakens muscles throughout the body, restricting movement and speech. Its most famous sufferer, the scientist Stephen Hawking, has relied on a wheelchair and a speech synthesiser for decades — but half of those who are diagnosed do not survive the next three years.

There is currently no cure for ALS. But thanks to the ice bucket challenge, 80 scientists from around the world were able to sequence the genomes of 15,000 ALS patients. ‘The only way we could do this research was through those crowdfunding projects,’ said the lead researcher.

The news of the campaign’s success is a rebuke to those who labelled it ‘slacktivism’.

‘For most of the people posting ice bucket videos... the charity part remains a postscript,’ wrote Slate at the time. How many were really donating? Did they actually care about ALS? Was the challenge taking money away from other charities?

But the naysayers were proved wrong. The ice bucket money was given on top of people’s usual donations. And researchers say that the campaign also helped in professional circles. ‘We are seeing more and more thinking that ALS should be a [research] target.’

Making a splash

This is wonderful news. But some point out that for every ice bucket challenge, there are thousands of failed internet campaigns. Over 3m people pledged to stop the warlord Joseph Kony in 2012, but he is still at large. The British government rejected a 4m-strong petition asking for a second EU referendum. Even Boaty McBoatface went nowhere. Online activism still very rarely changes anything.

Others are prepared to admit that of course not every campaign goes to plan. But it is clear that without the ice bucket funding the research would not have happened, with results far beyond expectations. Yes, it is hard to predict which campaigns will catch the public’s imagination, let alone which will make a real difference. But the only way to guarantee their failure is not to try in the first place.

You Decide

  1. Why are some social media campaigns so much more successful than others?
  2. Has society become too cynical about doing good?

Activities

  1. In groups, make a video which raises awareness for a charity you care about. See if you can make it go viral!
  2. Research the symptoms of ALS. Then create a pamphlet explaining the disease to the family and friends of people who have recently been diagnosed.

Some People Say...

“Charity benefits the giver more than the receiver.”

What do you think?

Q & A

Why so much scepticism about giving money to charity?
It was feared the message was being lost. People seemed more interested in funny videos than spreading awareness about a disease, and some barely mentioned the charity at all. The story has a happy ending, but the critics had a point too: should charity donations really be decided by which campaign has the best viral videos?
Any other interesting results?
The challenge did appear to raise awareness of the disease. For example, the American Medical Association now receives around 25% more funding each year than it did before the summer of 2014.
I want to start a campaign. What do I do?
It is relatively simple to start a petition or fundraising page and share it on social media. Make sure you have a clear message, and don’t give up!

Word Watch

ALS
Also known as motor neurone disease and Lou Gehrig’s disease, amyotrophic lateral sclerosis (ALS) usually affects people aged between 40 and 70, but can appear earlier in life.
Gene variant
The gene, NEK1, appears in 3% of ALS patients and seems to relate to repairing DNA as the body ages. If it does not work very well, faults in DNA can build up over time.
Stephen Hawking
The scientist was diagnosed with ALS when he was 21. Less than 5% of ALS patients survive the next two decades, but Hawking is now 74 years old — probably making him the longest surviving ALS sufferer in the world.
Genomes
The complete set of an organism’s genetic material — or rather, the ‘recipe’ for a living thing’s unique DNA.
Usual donations
Research by the Charities Aid Foundation in the UK showed that the campaign led to a spike in charity donations, after which the figures returned to normal.
Joseph Kony
Leader of the Lord’s Resistance Army, a guerilla force in Uganda that recruits child soldiers. Despite its publicity, the group which shed light on the issue in 2012 dissolved two years later.

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