Remember the ALS Ice Bucket Challenge? It Worked

The more sceptical of us might never have believed it would amount to anything.

On July 15th, 2014, golfer Chris Kennedy took part in a new trend making its way across social media: the Ice Bucket Challenge. Drenched with ice cold water, he then called upon several friends to undertake the challenge themselves, or else donate to a charity of his choosing.

Though the challenge wasn’t new in its own right – it stems back, in some form, to 2012 – what set Kennedy’s video apart is his choice for friends to donate to the ALS Association.

Within days, the Ice Bucket Challenge had become a viral phenomenon dedicated specifically to raising funds for the prevention of ALS – Amyotrophic Lateral Sclerosis – a motor neurone disease that causing the extreme deterioration of a sufferer’s muscular system.

Naturally, it was met with criticism. The challenge was dismissed as trivial, and participants branded narcissists, with over 2.4 million videos circulating on Facebook alone. Worse was when the ALS Association attempted to trademark Ice Bucket Challenge in August of 2014. The reaction was so profoundly negative that they retracted their claim a day later.

But there were some positives.

After just a month, Wikipedia’s English article on ALS saw an increase in views from 163,300 in July, to 2.89 million in August. Celebrities took part in the challenge (or some, like President Obama, declined but still donated) and would often end the videos by directing viewers to the ALS Association’s website. If awareness is what they wanted, it’s what they got.

In total, over $100 million USD was donated to a range of ALS-related organisations internationally. Whether the money would ultimately reach its destination or be tied up in administration fees as is so often the case was unclear, but participants didn’t seem concerned.

Fortunately, some of the donations ended up in the hands of Kevin Kenna, his brother Brendan, and wife Aoife. Working out of the University of Massachusetts, the team went in search of genetic markers that bore signs of connections with ALS along with 90+ other researchers across 12 countries.

On July 25th, 2016, their findings were published online. The article focused on NEK1, a gene which Kenna and his partners believe contributes to approximately 3% of ALS cases. It’s a major clue on the path to discovering the ultimate cause of the disease and how it can be treated or avoided altogether.

“…this work would certainly not have been possible without the funds raised by the ALS ice bucket challenge and organisations like project MinE,” Kenna told Independent. “Specifically the ice bucket funds have allowed the research community to generate detailed gene profiles of DNA samples donated by large numbers of ALS patients. These profiles are generated using DNA sequencing technologies and this study is by far the largest of it’s kind.”

The findings not only reinforce the importance of charitable donations, but shows just how much potential such campaigns have when they evolve beyond call centres and collection buckets. Sure, only 10% of people who took the Ice Bucket Challenge actually gave money to relevant organisations, but it was enough to make a difference.