Research reveals more awareness needed for Ice Bucket Challenge cause

Ten years on from the Ice Bucket Challenge, new research shows less than a third of people in Scotland knew why they took on the cold-water challenge.

Despite 83% of Scots being aware of the Ice Bucket Challenge, and over 38% taking part in 2014, only 28% were aware that the aim was to raise funds for motor neuron disease (MND) charities.

This month marks 10 years since the Ice Bucket Challenge took social media by storm, increasing awareness and raising vital funds for motor neuron disease (MND) and amyotrophic lateral sclerosis (ALS) charities worldwide. Participants from 159 countries took part in the challenge, raising $220 million globally.

MND, also known as ALS, is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This can cause someone to lose the ability to walk, talk, eat, drink or breathe.

MND Scotland, the only Scottish charity dedicated to directly supporting individuals, families and carers affected by motor neuron disease (MND), carried out research to mark the 10 year anniversary of the original Ice Bucket Challenge.

The survey results highlighted the Scottish public’s understanding and perception of the viral challenge, including:

– 68% of participants associated the challenge with a social media trend
– 24% did not associate any health condition with the ice bucket challenge
– 26% admitted they were unsure as to what the challenge was in aid of
– Northeast Scotland had the greatest number of people (18%) being nominated and participating in the cold-water challenge

The Ice Bucket Challenge was started and promoted by Pete Frates, Pat Quinn and Anthony Senerchia in the summer of 2014, to help raise money and spread awareness of MND. The men were aged between 27 and 32 when they were diagnosed with MND.

The challenge involves individuals pouring ice-cold water over themselves and nominating others to do the same.

Over £500,000 of funds was raised for MND Scotland. The funds have been used to support those affected by MND and allowed the charity to invest more in research. The subsequent increased awareness and fundraising enabled MND Scotland to take the bold step of committing £1.5 million to start an innovative clinical trial anchored in Scotland. MND-SMART is now the largest-ever MND clinical trial in the UK and MND Scotland has committed a further £2million to support it until 2028.

Jane Haley, Director of Research, MND Scotland, said: “The Ice Bucket Challenge was an astonishing global success, which took everyone by surprise. The increased awareness, and ongoing generous donations, have really transformed the research landscape and, across the world, there is now more research taking place than ever before. The challenge now is to translate that into treatments for people with MND because, frankly, it’s about time there was a cure.”

This year, MND Scotland is asking supporters from across Scotland to help raise awareness of the disease by participating in another ice bucket challenge to mark the 10-year anniversary and help make time count for people affected by MND.

Jim Maxwell was diagnosed with MND in February 2020 following the onset of symptoms, including twitching. He lives in Edinburgh and has two daughters.

Jim said: “Ten years ago I took on the ice bucket challenge because I was nominated on Facebook. I didn’t know what it was raising money for, or what MND was. Ironically, six years later I was diagnosed with the disease. While living with MND is challenging, I want to do everything I can to raise awareness of the disease and improve understanding of how it impacts people.”

Jonathan Mitchell, Head of Fundraising, MND Scotland said: “This August, we want to say thank you to everyone that took part 10 years ago but also remind people that there is still no cure for MND and people with MND need our support. Every year in Scotland, 200 people are diagnosed with this devastating disease.

“This month, you can show your support by taking on another ice bucket challenge or re-sharing your video from 10 years ago and encouraging donations to support people in Scotland living with MND. Like the original challenge, you can nominate others to take on the Ice Bucket Challenge and share their videos to help raise awareness of this brutal disease.”

Getting involved

If you would like to support MND Scotland by taking part in an ice bucket challenge or to nominate a friend or family member, please click here.

You can also support the challenge by sending a text with the word ‘ICED’ to 70085 to donate £10 or via the JustGiving page.