Ice bucket challenge raises millions for motor neurone disease research, US ALS Association says
The ALS ice bucket challenge has proven it is worth far more than being an amusing online distraction, raising US $88.5 million (AUD $95 million) in the US and $700,000 in Australia since it went viral in July.
National Director of the Motor Neurone Disease (MND) Australia Carol Birks said the campaign represented a 15-fold increase in the amount of funds raised for the organisation.
"At least half of it has been designated to research, people have chosen it to go to research," Ms Birks said.
"Because of the amount that has been received we have initiated an ice bucket challenge research grant, and research grant applications actually close on Friday so this has been wonderful timing for research."
The ALS challenge began in the US, and challenged participants to dump a bucket of ice over their heads to raise money and awareness for amyotrophic lateral disease (ALS).
It went viral in July this year, attracting celebrities including Bill Gates, Ricky Gervais and Kermit the Frog.
Ms Birks explained that the challenge was problematic in Australia because the term ALS was not commonly used here, but it had still raised the opportunity to talk about the disease.
"One form of MND is ALS and it's the most common form, about 65 per cent of cases of MND are ALS," she said.
"So in the US and some other countries around the world they use that term, where as here we use the term MND.
"It has been problematic but I think this challenge has given us the opportunity to talk about MND ALS and to explain to people that they are one and the same disease."
Ms Birks said the Australian organisation became involved with the campaign when the International Alliance of ALS MND Associations challenged them on August 11.
"That's when it sort of went outside of the US and started to go global," she said.
"Then we challenged the research community and they all got involved, I challenged New Zealand and they go involved and it all happened from there really.
"We're a very close knit of associations, we all work very closely together and follow each other on social media and that's how it started."
From $2.6m to $88.5m to ALS research
Barbara Newhouse, CEO of the American ALS Association said that they had been awestruck by the success of the campaign, which has attracted 1.9 million new donors in the US.
She said during the same time period last year (July 29 to August 26) the association raised $2.6 million.
"Every day, given this dramatic increase in funding, the scope of what's possible when it comes to fighting this disease has changed and continues to change," Ms Newhouse said in a statement.
"This isn't a matter of spending these dollars quickly, it's a matter of investing these dollars prudently to achieve maximum impact in our quest to help people living with the disease and those yet to be diagnosed."
Ms Birks said Australian sufferers would also benefit from the phenomenal amount of money raised in the US.
"This disease has no boundaries and the research efforts are global, so we and many of the researchers do collaborate around the world," she said.
Ice bucket challenge more than 'slacktivism'
Ms Birks said it was important for people participating in the ice bucket challenge to learn about the disease, and urged people not to be cynical about it.
"I think you've just need to look at the amount of money raised world wide, that people are donating," she said.
"Also look at the comments made by people who have been impacted by the disease and see how much it means to them."
She said MND Australia hoped to raise $1 million before the campaign ran its course.
