This profile appeared in The National on Thursday 28 July 2016.
THE Ice Bucket Challenge that went viral in 2014 has helped to fund an important scientific discovery related to the progressive neurodegenerative disease ALS.
It raised £87.7 million through participants encouraging donations by pouring freezing water over themselves and uploading a video of their exploits to social media.
Participants also nominated a number of friends to take the challenge.
The money has helped scientists at Project MinE – a data-driven initiative – to discover a new gene, named NEK1, that contributes to ALS, also known as motor neurone disease. It allowed more than 80 researchers across 11 countries to test families affected by the inherited form of the condition.
And even though only 10 per cent of patients have the inherited form, researchers believe that a much higher percentage of cases are down to genetics.
The research was led by American and Dutch scientists and the newly discovered gene is now ranked among the most common genes that contribute to ALS.
One of the scientists involved in the research, Lucie Bruijn, told the medical journal Nature Genetics: “The discovery of NEK1 highlights the value of ‘big data’ in ALS research. The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available.
“The ALS Ice Bucket Challenge enabled The ALS Association to invest in Project MinE’s work to create large biorepositories of ALS biosamples that are designed to allow exactly this kind of research and to produce exactly this kind of result.”
WHAT EXACTLY IS ALS?
ALS stands for amyotrophic lateral sclerosis and can leave people unable to move, talk and, in some cases, breathe.
It does so by attacking the part of the nervous system that controls movement, immobilising the muscles, and kills around a third of those diagnosed within a year.
The disease can be sporadic or inherited and there is no known cure, though it is believed the discovery of the new gene will lead to new treatment possibilities.
Brian Frederick, executive vice-president of communications and development at the ALS association, said the discovery was significant “because it helps us understand what’s triggering this and can help us better find a treatment”. But he added: “It’s still very early in our understanding of this particular gene, and we still have a ways to go with understanding ALS generally.”
Professor Stephen Hawking, who himself took part in the challenge, is the most high-profile person with the disease.
ALS is also know as Lou Gehrig’s Disease after the New York Yankees baseball star whose death from the illness helped raise awareness of the condition.
WAS IT ALWAYS GOOD PRESS FOR THE CHALLENGE?
AT THE height of its popularity, the Ice Bucket Challenge faced criticism for merely being a postscript to the real cause and was construed by many as more of a vacuous vanity project for those involved.
It came hot on the heels of the controversial Neknomination movement, which encouraged participants to down an alcoholic drink before nominating others and was blamed for a number of deaths. One of these involved an Irish man downing a cocktail of spirits before jumping into a nearby river.
The Ice Bucket Challenge was also added by some to the long list of viral campaigns labelled as “slactivism”, alongside campaigns such as director Jason Russell’s attempt to “Stop Kony” in 2012.
The short film highlighted the Ugandan cult and militia leader Joseph Kony’s abuse and killing of children but had little impact and faced criticism for oversimplification.
However, two years after its notable presence on various social media platforms, the Ice Bucket Challenge answered its critics by facilitating an important scientific breakthrough.
WHAT ARE ITS ORIGINS?
THE exact origin of the Ice Bucket Challenge is unclear and has been linked to a few different sources.
The most commonly accepted origin credits a Boston College student as the mastermind when he was diagnosed with ALS in 2012. Other theories suggest two of his friends were also responsible.
It was initially called the Cold Water Challenge when it began to gain popularity.
According to the Wall Street Journal, it became known as the Ice Bucket Challenge after a group of professional golfers used the idea to raise money for various pet charities.
Since then more than 17 million people have taken part, including a number of celebrities and public figures, from Kim Kardashian and Benedict Cumberbatch to Alex Salmond.
One video involves Foo Fighters frontman Dave Grohl being doused in water while clutching a bouquet of roses, wearing a wedding dress and waving at an audience from a stage.
A more tongue-in-cheek version sees actor Patrick Stewart writing a cheque for the charity before reaching into a bucket for a single ice cube and placing it into a glass. He ends by pouring himself a drink and taking a sip, remaining silent throughout.