It was the social media craze of 2014, that also crept its way into 2015 – the Ice Bucket Challenge. Now, the ALS Association has announced that money raised from the viral trend helped lead to an important breakthrough in the neuromuscular disorder.
Dismissed by some at the time as “slacktivism” – an exercise that appears to do good while achieving very little – the Ice Bucket Challenge raised more than $115m (£88m) for motor neurone disease in a single month.
According to the release, researchers found a new gene, NEK1, that ranks among the most common genes that contribute to ALS. Researchers said the gene is present in both sporadic and familial ALS, and “gives scientists an exciting new target for drug development.”
In the near term the NEK1 gene variant, described in the journal Nature Genetics this week, will help scientists understand how the incurable disorder, known also as Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease, takes hold. Once the mechanisms are more clearly elucidated, it may steer researchers on a path towards much-needed treatments.
The work may never have happened were it not for the curious appeal of the frozen water drenchings. The research grants that scientists are awarded do not get close to the $6 million the study required. Instead, Project MinE, which aims to unravel the genetic basis of the disease and ultimately find a cure, was funded by the ALS Association through ice bucket challenge donations.
It was more than money that made the difference. Jan Veldink, who led the latest research at University Medical Centre in Utrecht, said that ALS charities in the US, UK, the Netherlands and elsewhere joined forces to make the project happen. National funding bodies would do well to do the same, he says. “It is a call for funding agencies to collaborate and not just fund projects within a few hundred kilometres, to think globally and synchronise their efforts.”
He said that when he saw the ice bucket challenge play out on social media, he was thrilled, adding that he was honoured that his project was chosen as a recipient of funds.
“It was one of the most successful campaigns on social media, it came out of the blue,” he said. “The funding has helped us with research, but it has also had a profound effect on the attention not only on the general public but also in biotech and pharmaceutical companies – we are seeing more and more thinking that ALS should be a target [for research].”
The viral campaign was only the start of the crowdfunding effort that brought in the research money. “It was the first and the largest and the most important crowdfunding activity, but then there were city swims in Amsterdam and in New York, and then cycling events,” Veldink said. “The only way we could do this research was through those crowdfunding projects.”
Millions took part in the ice bucket challenge, including celebrities, and submitted to a bucket of iced water being poured over their head in return for donations to the charity and the chance to nominate others to follow suit.