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Ice Bucket Challenge funds major breakthrough in ALS research

‘It is a prime example of the success that can come from the combined efforts of so many people’

Sadie Levy Gale
Wednesday 27 July 2016 10:14 EDT
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Frankie Dettori and Clare Balding take part in the ‘Ice Bucket Challenge’ at York racecourse on August 22, 2014.
Frankie Dettori and Clare Balding take part in the ‘Ice Bucket Challenge’ at York racecourse on August 22, 2014. (Getty)

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Cynics may have dismissed the Ice Bucket Challenge campaign as a stunt, but it helped fund research that has led to an important breakthrough.

A study given $1m (£760,000) raised by the ALS Association's campaign has led to the discovery of a gene that appears to be behind some cases of amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that affects nerve cells in the brain and spinal cord.

The Challenge, which encouraged people to dunk a bucket of iced water over their heads in order to solicit donations, raised more than $100m (£76m) in a month, and was able to support multiple research projects.

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One of which was Massachusetts University Medical School’s Project MinE, which has now identified the role of a gene called NEK1 in ALS, also called motor neurone disease or Lou Gehrig's disease in the US..

It is only associated with 3 per cent of all ALS cases, but it is present in both the familial and sporadic forms of the disease.

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Its variants could help researchers understand and develop new possible treatments for ALS sufferers.

Dr. John Landers, the leader of Project MinE, said in a statement: “Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery.

“It is a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS. This kind of collaborative study is, more and more, where the field is headed.”

The study was the largest-ever examination of familial ALS, involving contributions from 80 researchers in 11 countries.

"The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world," Bernard Muller, founder of Project MinE and ALS patient, said.

"This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS."

Dozens of celebrities, including Tom Cruise, Rita Ora, Mark Zuckerberg, Anna Wintour and Robert Downey Jr, took part in the challenge.

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