Call It ‘Slacktivism,’ But ALS Ice Bucket Challenge Really Worked

Remember the viral 2014 trend that encouraged millions of people to douse themselves with ice-cold water? Well, it just led to an ALS breakthrough.

Ice Bucket Challenge

A lot of important things might have happened in 2014, but it would always be remembered as the year of the Ice Bucket Challenge — a viral charity campaign that saw over 17 million people dumping buckets of freezing water on their heads and posting the videos online.

The massive social media-fueled campaign, which many dismissed as “slacktivism” (lazy activism) and a futile pop culture trend, was actually created for a very important cause. It raised awareness about amyotrophic lateral sclerosis (ALS), also known as the Lou Gehrig's disease, which is a progressive neurodegenerative disease affecting nerve cells in the brain and the spinal cord.

People, including a slew of celebrities, politicians, tech giants and athletes, doused themselves in iced water in order to solicit donations before nominating others to do the same. The donations, as it turns out, have bankrolled a significant gene discovery, according to the ALS Association.

In fact, the challenge has funded six breakthroughs to date.

In just eight weeks after the trend gained steam online, $115 million was donated to the association, 67 percent of which was dedicated to treatments and cure research. A million dollars also went toward Project MinE, aimed to identify the gene responsible for the neurological disease.

“The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available,” said Dr. Lucie Bruijin, the chief scientist at the ALS Association. “The ALS Ice Bucket Challenge enabled The ALS Association to invest in Project MinE's work to create large biorepositories of ALS biosamples that are designed to allow exactly this kind of research and to produce exactly this kind of result.”

At the time, many publications and media figures called the aid campaign “problematic” and criticized it heavily for water waste. Many also claimed that the charity aspect had become secondary to garnering likes and shares on the videos.

A lot of people believed it was all just for a good laugh. Well, who’s laughing now?

“Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery,” said another researcher Dr. John Landers. “It is a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS. This kind of collaborative study is, more and more, where the field is headed.”

NEK1, the newly discovered gene, may only exist in 3 percent of ALS cases but it has given the researchers a new target for the development of possible treatments.

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