The Legacy of the Ice Bucket Challenge - Internet Phenomenon of 2014

13 July 2017

Around 2 million videos of shrieking people were uploaded, the official hash tag received over 4 million mentions on Twitter, and 28 million people joined the conversation via posts, likes and challenges(1).

However, for many the connection with motor neurone disease (MND) may not have been immediately apparent, while others dismissed it as a stunt.

So three years down the line, did the Ice Bucket Challenge really make a difference?

In fact, the impact of freezing water snaking beneath waistbands had an immediate effect.  Between the 22nd and 29th August 2014 alone, £2.7 million worth of donations were made to the Motor Neurone Disease (MND) Foundation - over 13 times more than the charity received over the same period in 2013(2).

By end of October, the Ice Bucket Challenge was estimated to have raised more than £88 million for MHD research(3).

Fast forward to 2017, and the funds raised have already funded six research projects which are revolutionising the way we view motor neurone disease(4).

One recipient of the additional funding was Project MinE - a team of 80 researchers across 11 countries that discovered the link between the NEK1 gene and MND in 2016(5).

The team discovered the NEK1 appears to help repair DNA damage that accumulates as we age, but also found DNA repair may be less efficient in those with MND than those without the condition.  These learnings are already shaping future research.

The research grants that scientists are awarded do not get close the 4 million Euros that Project MinE was estimated to have cost(6), and Jan Veldink, who led the research team, was quick to pay compliment to the impact of the Ice Bucket Challenge.

"The funding has helped us with research, but it has also had a profound effect on the attention of not only the general public, but also in biotech and pharmaceutical companies.  We are seeing more and more thinking that ALS [MND] should be a target [for research]."

Every day six people are diagnosed with MND in the UK(7) while an MND diagnosis is made every 90 minutes within the US(8).  But with initiatives such as Project MinE continuing to benefit from the awareness and funding generated by the Ice Bucket Challenge, it is hoped that a cure for MND is ever closer.

(1) http://www.losberger.co.uk/mass-participation-events-how-social-media-has-profited/

(2) http://www.cityam.com/205707/digital-revolution

(3) http://www.alsa.org/fight-als/ibc-progress.html


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