During 2015 and 2016, the Ice Bucket challenge went viral with thousands of videos going up online. People would throw buckets of ice and water on themselves or friends, record the act and challenge others to do the same, while also making a small donation to the ALS Association. We break down exactly what happened and if it worked.
What is ALS?
ALS stands for amyotrophic lateral sclerosis, and falls under conditions termed motor neurone disease. The condition causes death of neurons or brain cells that control muscular activity and it has no cure. Starting off with stiff muscles and muscle twitching, the conditions worsens to smaller muscle size and muscle weakness - making simple activities like speaking and breathing impossible.
How did the Ice Bucket challenge start?
It all starts with, as they say, one man and his name is Pete Frates. He was diagnosed with ALS in 2012 and he shared the idea of a simple challenge to raise funds for researching cures for the degenerative disease with his friends. This simple idea led to 17 million videos of people doing the challenge including Oprah Winfrey, Bill Gates and Beyonce among other A-listers. The videos were watched by over 440 million people worldwide.
Where is Pete now?
After 5 years of living with ALS, Pete is currently on life-support and has to be hospitalised now and then. Yesterday, there were false news reports that he passed; he effectively stopped that with this tweet.
in the words of my friend
ed pic.twitter.com/g7iIR4rfmT— Pete Frates (@PeteFrates3) July 3, 2017
CNN reported in May that his medical costs are above US$3,000 (above Dh11,000) per day and that a new fund was being created to help him and others with ALS who need home care.
How much money did ALS make?
The ALS Association reported that they got a total of US$115 million (Around Dh422 million) from the challenge. US$77 million (around Dh282 million) from this amount was used for research, US$23 million (over Dh84 million) for patient and community services, US$10 million (approximately Dh36.7 million) for public and professional education, and the rest for further fund-raising and external processing costs.
Pouring ice over your head just might have saved someone's life directly because the association reported that through research by Project MinE in the past year, they may have found the mutative gene that is responsible for ALS. The gene, named NEK1, is connected to only 3 per cent of ALS cases worldwide. However, it is present in all inherited and randomly derived or sporadic forms of the disease which is why the finding is so significant for possible cures or treatments.
The challenge is still done in August every year but it isn't as popular now. If you don't feel like being dunked in ice-cold water, go the Obama way and just donate.