Saturday 1 October 2016

Ice bucket challenge helps fund breakthrough discovery in ALS research

Meadhbh McGrath

Published 27/07/2016 | 15:13

Kim Kardashian's ALS Ice Bucket Challenge live on Ellen
Kim Kardashian's ALS Ice Bucket Challenge live on Ellen
Top Irish models get a dousing in aid of the MND Ice Bucket
Minister James Reilly's ice bucket challenge

The ice bucket challenge that dominated the summer of 2014 has funded a breakthrough discovery in treatment for the disease ALS, the ALS Association said.

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Scientists have identified a new gene, NEK1, that contributes to the disease, and can now attempt to develop therapies to treat it.

The ice bucket challenge was designed to promote awareness of ALS, also known as motor neurone disease (MND), a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

The social media campaign became a viral phenomenon and raised $115m (€104m) from people who filmed themselves pouring freezing cold water over their heads and shared the videos online.

Each person who completed the challenges was expected to then donate cash to the ALS Association and nominate three more people to do the same.

More than 17m people posted videos on Facebook, including celebrities like Oprah, Bill Gates, Taylor Swift, Justin Bieber and Amy Huberman.

The campaign was criticised as a form of “slacktivism” for people more interested in social media stunts than donating to charity, but it has funded a number of research projects, including the groundbreaking study.

Some 10pc of cases involves genes inherited from a family member, and the study involved more than 80 researchers in 11 countries working with families affected by the disease.

Top Irish models get a dousing in aid of the MND Ice Bucket
Top Irish models get a dousing in aid of the MND Ice Bucket

“The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available,” Lucie Bruijn of the ALS Association said.

Minister James Reilly's ice bucket challenge
Minister James Reilly's ice bucket challenge

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