Scots campaigners welcome Ice Bucket Challenge breakthrough

Thousands of Scots took part in the Ice Bucket Challenge in August 2014. Picture: Alastair Pryde/JP Resell
Thousands of Scots took part in the Ice Bucket Challenge in August 2014. Picture: Alastair Pryde/JP Resell
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IT WAS the viral charity campaign backed by everyone from Alex Salmond to Andy Murray.

But the Ice Bucket Challenge, which swept across the world in August 2014, has helped researchers discover a new gene associated with amyotrophic lateral sclerosis (ALS) - also commonly known as motor neurone disease (MND).

The US-based ALS Association revealed today it raised more than £76 million from the challenge in a 30 day period.

The charity in turn contributed $1 million to Project MinE, an international study which led to the discovery of a new ALS gene, NEK1, which now ranks among the most common genes that contribute to the disease.

“The discovery of NEK1 highlights the value of ‘big data’ in ALS research,” said Lucie Bruijn, chief scientist for the ALS Association.

She added the charity money was vital to the project’s success.

MND campaigner Gordon Aikman celebrates raising �500,000 for research into the condition. He welcomed the news of the gene breakthrough. Picture: Greg Macvean/TSPL

MND campaigner Gordon Aikman celebrates raising �500,000 for research into the condition. He welcomed the news of the gene breakthrough. Picture: Greg Macvean/TSPL

Gordon Aikman, an MND patient and campaigner from Edinburgh who has raised more than £500,000 for research into the condition, welcomed the breakthrough.

“This major breakthrough takes us one step closer to the day we find a cure,” he said.

“The development pours cold water over claims the challenge was a silly stunt. MND research progress is on fast-forward because of it.

“People should keep on giving because it does make a difference. Until we have a cure we cannot rest.

“It might be too late for me, but we can and we must find a cure for future generations.”

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The Ice Bucket Challenge encouraged people to film themselves having a bucket of iced water poured over their heads in order to solicit donations, before nominating others to do the same.

Scores of celebrities including Mark Zuckerberg, Bill Gates and Tom Cruise helped popularise the campaign in North America before it quickly spread across Europe.

Then First Minister Alex Salmond and Andy Murray were among the thousands of Scots to take part.

There are over 450 people in Scotland who have MND, while 160 Scots are diagnosed each year. The average life expectancy from diagnosis is just 14 months.

MND Scotland said the ongoing legacy of the Ice Bucket Challenge was “the incredible awareness it raised”.

“More people are continuing to donate and fundraise for us, with many stating they had never heard of MND before the challenge,” said Craig Stockton, the charity’s CEO.

“We are thrilled by the announcement of this new gene discovery. The discovery of this new gene helps to fill in another piece of the jigsaw that is MND.

“While further research is needed to understand what part the NEK1 gene plays in the development of MND, it will provide scientists with an important new target for developing new treatments. This news shows that continuing to fund vital research is the only way to take us a step closer to finding a cure.

“Building on the success of the Ice Bucket Challenge and the incredible awareness it raised, we have been able to invest more than ever in research, including a further £450,000 investment into projects taking place in Scotland.

“Through further investment in research and discoveries such as this one, we will find a cure for MND.”

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