Remember The Ice Bucket Challenge? Money Raised From The 2014 Viral Sensation Just Led To A Major Breakthrough In Fight Against ALS


The Ice Bucket Challenge was the biggest viral craze of 2014 — possibly of all time — and now the wildly popular fundraiser just helped lead to a pivotal breakthrough in ALS research.

This week, researchers from the University of Massachusetts Medical School’s Project MinE announced that they discovered the gene responsible for the degenerative disease. It was hailed as an important step in finding a treatment and possibly an eventual cure for the disease.

“The identified gene is NEK1, which its variants could provide clues to understanding and potentially treating familial and sporadic ALS,” the New York Daily News reported.

Researchers directly praised the ALS Ice Bucket Challenge for helping pave the way for the breakthrough.

“The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world,” Bernard Muller, founder of Project MinE and ALS patient, said in a statement. “This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS.”

The Ice Bucket Challenge craze kicked off in the summer of 2014, originating as a show of support for a Boston College student diagnosed with the disease, Pete Frates.

Pat Quinn, a friend of Frates, came up with the idea to dump ice-cold water on the participant’s head or else donate a given amount to the ALS Association. The person who participates then nominates other friends to take the challenge, ensuring that it spreads from there.

It soon exploded in popularity. Today Show anchor Matt Lauer was one of the first major celebrities to participate, kicking off a wave of actors, athletes, and politicians to take part. Justin Bieber, LeBron James, and Donald Trump soon followed. George W. Bush took part, and in turn nominated Bill Clinton. Barack Obama was nominated as well, but chose to donate $100 in lieu of participating.

One of the biggest parts of the craze was taking a video of the challenge and sharing it. There were more than 2.4 million videos tagged to Facebook featuring the ALS Ice Bucket Challenge, The Guardian noted. It also brought a wave of new donors to the ALS cause, raising more than $220 million in total.

The Ice Bucket Challenge was a huge success both in raising money and raising awareness for ALS, so much so that the ALS Association even worked the viral challenge into its page describing the disease.

“There are two different types of ALS, sporadic and familial. Sporadic which is the most common form of the disease in the U.S., is 90 – 95 percent of all cases. It may affect anyone, anywhere. Familial ALS (FALS) accounts for 5 to 10 percent of all cases in the U.S. Familial ALS means the disease is inherited. In those families, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease. French neurologist Jean-Martin Charcot discovered the disease in 1869.

“During the 2014 ALS Ice Bucket Challenge, millions of people started talking about ALS. Keep the conversation going to increase understanding of the disease.”

There is still not a cure for ALS, though there is one FDA-approved drug that can slow its progression in some people. But while researchers are still working on a cure that could stop or even reverse the effects of the disease, there have been some important breakthroughs in their knowledge of ALS and how it progresses.

The ALS Ice Bucket Challenge may continue contributing to the fight against the disease. After the explosive success of its 2014 campaign, organizers have vowed to keep it going every year, with August as the target month. It found a popular run the second time, with a number of politicians and celebrities including Massachusetts Governor Charlie Baker and actor Hugh Jackman taking part in 2015.

[Photo by Charles Krupa/AP Images]

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