ALS Ice Bucket Challenge

The Ice Bucket Challenge Worked, Led To Discovery Of Gene Responsible For ALS

Never doubt the strength of the human spirit. Remember the crazy Ice Bucket Challenge everyone was doing back in 2014? Turns out it had a positive effect.

The Ice Bucket Challenge was one of the fads that “broke the internet” (a phrase that also dates from 2014) and dominated social media worldwide.

It was crazy at the time. Everyone and their brother challenged everyone else to throw a bucket of ice-water over their head. Social media was full of videos of the bizarre challenge, with friends nominating other friends to continue the trend or pay up money to the ALS Association fund.

Even Bill Gates, Mark Zuckerberg, and former U.S. President George W. Bush rose to the occasion. The current U.S. president, Barack Obama, didn’t follow through with the ice but did donate an undisclosed – and no doubt generous – amount to the ALS cause.

Ellen DeGeneres also got involved by volunteering someone else for the challenge.

At the time the challenge faced heavy criticism for water waste, and in many cases, it was dismissed as a form of “slacktivism,” or lazy activism. However, it seems the craziness paid off. On Monday, the ALS Association announced that the campaign, launched to raise awareness of ALS, had worked and had raised sufficient funds for an important research breakthrough.

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects the spinal cord and nerve cells in the brain. Reportedly, within from two to five years of diagnoses, the patient is unable to move and talk. The ALS sufferers eventually lose their ability to breathe, leading to death.

According to CNN, around 17 million people posted videos of themselves dumping ice water over their heads online, and this certainly had an effect. The Ice Bucket Challenge managed to raise a whopping $115 million to the cause, and with this, the ALS Association was able to fund research by project MinE, reportedly the largest ever study of inherited ALS.

Published in Nature Genetics, the study states that scientists have now identified a new gene contributing to the disease – NEK1. Now, scientists will be able to develop a gene therapy to treat it.

Lucie Bruijn of the ALS Association said in a press statement, “The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available.”

“The ALS Ice Bucket Challenge enabled The ALS Association to invest in Project MinE’s work to create large bio repositories of ALS bio samples that are designed to allow exactly this kind of research and to produce exactly this kind of result.”

According to the ALS Association, NEK1 is the third ALS-related gene discovered by researching using the funds raised by the Ice Bucket Challenge. However, the project that found the latest gene is unique, as someone who actually suffered from ALS was involved in the discovery.

ESPN quotes Bernard Muller, an entrepreneur suffering from ALS who helped to start the research project, as saying, “The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world.”

“This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS. I’m incredibly pleased with the discovery of the NEK1 gene adding another step towards our ultimate goal, eradicating this disease from the face of the earth.”

Reportedly, more than 80 researchers from 11 countries were involved in the study.

[Photo by Michael Hickey/Getty Images]