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  1. ITV Report

Ice bucket challenge leads to scientific breakthrough

Kim Kardashian's high profile dousing on Ellen came at the height of 2014's Ice Bucket Challenge craze. Credit: Ellen

The global craze that saw celebrities join millions in being doused in freezing water for charity has been credited with funding a scientific breakthrough.

A host of famous names, from Bill Gates to Kim Kardashian and Stephen Hawking to George W Bush, took part in the Ice Bucket Challenge in 2014 to raise awareness of ALS, commonly known as motor neurone disease in the UK.

  • Video report by ITV News' reporter Sejal Karia

The worldwide campaign raised £75 million within the first four weeks - including £6.8m in the UK - but drew a backlash from some quarters who accused the star participants of ignoring the cause at the centre of the icy splash.

Former US president George W. Bush was doused in ice cold water by his wife Laura. Credit: YouTube

Two years on, though, their efforts are being hailed for funding research that has discovered a gene linked to the disease which could spark new treatments and therapy developments.

Project MinE, which was largely paid for through donations to the ALS Association, conducted the biggest ever study of inherited ALS.

F1 star Lewis Hamilton was among the high-profile participants in the Ice Bucket Challenge. Credit: Reuters

The research led by American and Dutch scientists took in contributions from more than 80 researchers in 22 countries.

The newly discovered associated gene, NEK1, now ranks among the most common genes that contribute to the disease, according to a paper in 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.

– Participating scientist Lucie Bruijn

She directly credited the impact of 2014's high-profile fundraising efforts for expanding the test pool.

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.

– Lucie Bruijn

Motor Neurone Disease attacks parts of the nervous system which control muscles, effecting sufferers' ability to talk and eventually rendering them immobile.

In the US it is known as ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's Disease, after the New York Yankees baseball star whose illness and death raised awareness of the disease.