Health News

The Ice Bucket Challenge Has Funded An ALS Breakthrough

In the summer of 2014, thousands of people took to YouTube to post videos of themselves fulfilling the ALS Ice Bucket Challenge, in what has perhaps been the largest viral charity campaign to have hit the world.

The challenge, which involved pouring a bucket of ice water over one’s head then nominating others to do the same, was enthusiastically performed by celebrities, public figures, well-known personalities and even some political leaders. Bill Gates, Mark Zuckerberg, Robert Downey Jr., Tom Cruise, Sir Ian McKellen, Anna Wintour and former US President George Bush all did the challenge. Even the inestimable Stephen Hawking took part in it, although his family got drenched on his behalf.

While the viral campaign went on to be viewed by millions, it was criticized as “slacktivism” by many, in that it lacked real-world impact, The Guardian reports. Critics wrote that the charity seemed to be more of a side note than the main goal, as the rush to do the challenge was more of a bandwagon effect. Time magazine called it “problematic,” in that “most of its participants…didn’t mention the disease at all. The chance to jump on the latest trend was an end in itself. In fact, the challenge’s structure seems almost inherently offensive to those touched by ALS.”

However, a discovery funded by that very same discovery may just have proven naysayers wrong.

The campaign raised more than $100 million in 30 days, and was able to fully fund multiple research projects focused on ALS.

One of these, Project MinE, a data-driven program financed by the ALS Association through the Ice Bucket Challenge donations and support from its Georgia and New York chapters, has announced a breakthrough. The researchers on the project have identified a new gene associated with the disease, which they believe could lead to potential new treatments.

ALS, Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease, is a neurological condition wherein the motor neurons that control muscle function die slowly. ALS is either inherited or sporadic, and there is no current cure for either.

Brian Frederick, executive vice-president of communications and development at the ALS Association, said that the discovery was exciting as everyone who contributed to the Ice Bucket Challenge has had an impact on the disease. “The work that Project MinE is doing is really important, and the discovery of this new gene will help us better understand ALS,” he said.

The new gene, NEK1, is linked to just 3% of all ALS cases, but is present in both inherited and sporadic forms of the disease. Researchers say this gives them a new target for developing possible treatments.

Project MinE has been sequencing the genomes of 15,000 people with ALS, and involves more than 80 researchers in 11 countries.

Frederick says the discovery will help scientists understand the reason behind ALS, though he added that, “It’s still very early in our understanding of this particular gene, and we still have a ways to go with understanding ALS generally.”

The study was published in Nature Genetics.

Click to comment
To Top

Hi - We Would Love To Keep In Touch

If you liked this article then please consider joing our mailing list to receive the latest news, updates and opportunities from our team.

We don't want an impostor using your email address so please look for an email from us and click the link to confirm your email address.