Revealed: How your ice bucket challenge money is being spent

Hundreds of millions of dollars were raised for ALS last year

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Indy Lifestyle Online

It seems like a distant memory now, but the ice bucket challenge was sweeping the globe this time last year, and thousands of people were being drenched to raise awareness of Amyotrophic lateral sclerosis (ALS).

At the trend's peak, everyone from the milkman to Gwyneth Paltrow was filming themselves being soaked and nominating others to take part and donate.

It is believed that some 17 million people participated in the challenge.

But the craze soon sparked think pieces questioning how many of those who pledged to donate actually reached into their pockets.

Now, the ALS Association has revealed that 40 per cent of the $115million raised (£74million) has been spent or budgeted.

Of the remainder, 67 per cent will go towards research. $5million (£3million) of this portion will be dedicated to the Neuro Collaborative research group, which is creating stem cell lines from ALS patients that will mimic their nerve cells.

“We can start seeing why they're dying. We can start putting drugs on them to start seeing if we can slow them down,” Clive Svendsen of the Neurocollaborative told CNN.

“It's a bit like having an avatar of yourself in the petri dish.”

Some $23million (£15million) will be spent on patient and community services, to help patients with their communication and movement, and includes initiatives from supplying iPads to head-mounted laser pointers.

A $10million (£6.4million) portion is going towards educating the public as well as professionals such as doctors, while $3million (£1.9million) will be sectioned off for further fundraising efforts. A $2million (£1.2million) slice will be dedicated to processing donations.

 

ALS, or motor neuron disease as it's known in the UK, is a rare condition that the damages parts of the nervous system when motor neurone cells stop working properly. Over time, a sufferer’s muscles become weaker and often visibly waste away. This process is known as neurodegeneration.

Patients therefore find it increasingly difficult to walk, their grip weakens, and they are eventually left unable to speak, swallow or breathe.

Not content with resting on the laurels of last year’s success, the ALS Association is urging the public to make ice bucket challenges an annual event until there is a cure for the devastating disease. 

 

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