Social media users first started dumping frigid water on themselves to call attention to a cause in 2014. Over a decade later, the Ice Bucket Challenge has reemerged as a viral trend again, this time pointing to a different purpose.
Originally, it was known as the ALS Ice Bucket Challenge, which showed participants — ranging from your next-door neighbor to your favorite celebrity — posting videos of themselves getting soaked with cold water and calling out some names of people they “challenged” to do it next.
The goal was to raise awareness for amyotrophic lateral sclerosis (ALS), a rare degenerative disease that causes progressive paralysis of the muscles. According to the Mayo Clinic, since the disease affects the nerve cells in the brain and spine that control muscle movement, patients slowly lose their ability to speak, eat, walk and breathe independently.
ALS — also known as Lou Gehrig’s Disease — has no known cure. The life expectancy is usually between three to five years after diagnosis, according to the Muscular Dystrophy Association, though some patients can live decades.
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The ALS Association webpage for the Ice Bucket Challenge credits the massive trend to three men who were living with the disease: Anthony Senerchia, Pete Frates and Pat Quinn, all three of whom died over the years that followed. The organization also details how the phenomenon raised over $115 million, which was invested into research and care for those living with ALS.
In March 2025, a group at the University of South Carolina relaunched the trend, this time with a different cause in mind. Students involved with the school’s Mental Illness Needs Discussion club dubbed it the “#SpeakYourMIND ice bucket challenge.” They also opened a fundraiser for Active Minds, a youth mental health nonprofit, which has raised over $340,000 toward its $500,000 goal as of Friday, April 25.
As the world revisits the Ice Bucket Challenge nearly 11 years later, some faces from the ALS community are looking back on its original success. It’s undeniable that the viral freezing frenzy gave the disease unprecedented widespread recognition, but how did those millions of dollars help advance the fight against ALS?
CEO and founder of EverythingALS Indu Navar tells PEOPLE that she doesn’t think the allocation of funds was handled in the most efficient way after the Ice Bucket Challenge’s success.
“It wasn’t really thought through. Yes, there was a lot of money that was raised, but we still have no treatments. That money was not really deployed very well to really bring treatment to market,” the advocate says. “In the end, we’re still in the same place.”
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With EverythingALS, Navar helps to implement technological innovations, AI and machine learning in an effort to uncover the causes of ALS and bring new treatments to market. She became involved in the cause after her husband died of the rare disease at age 50, and at the time of his diagnosis in 2019, Navar says she pointed to the 2014 trend as evidence of the world’s attention to his illness.
“I said [to my husband], ‘Oh, there was the Ice Bucket Challenge, remember? There was a lot of awareness. I know they raised a lot of money. I’m sure you’re not going to die. There should be some solution.’ There was nothing,” she recalls.
“Did it hit that mark that everybody knows about ALS, most people? Yes,” Navar adds. “But did it hit the mark that we did something with that campaign and it helped the disease? No.”
While some are embracing the return of the ice bucket challenge, including Today co-host Jenna Bush Hager and Too Hot to Handle star Harry Jowsey, others are a bit more critical of the changed mission. Critical social media users are speaking out, and they’re joined by some content creators who are currently living with ALS.
Influencer Brooke Eby, known to her fans as @limpbroozkit, shared two reaction videos. In her first post, she looked directly into the camera as overlaying text read, “Watching people steal the ALS ice bucket challenge for a different cause when ALS still doesn’t have a cure and is 100% fatal. Fuming.”
In a statement to PEOPLE, Eby emphasized how much of a lasting impact the Ice Bucket Challenge has had in terms of ALS awareness. The trend marked “the first time ALS was being talked about and fundraised for on a global scale,” she notes.
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“To this day it’s still being referenced in all forms of media. The ice bucket challenge continues to bring eyes and money toward this disease that still has no effective treatment and is killing people in an average of 2 to 5 years after their diagnosis,” says Eby.
As the content creator explained in her second video about the resurgence, she isn’t necessarily knocking the University of South Carolina’s intentions.
“I love to see colleges and their students starting a viral fundraiser for a good cause, however choosing the exact same method of doing so, without any mention of ALS and why the original ice bucket challenge was so important, is disappointing,” Eby tells PEOPLE. “I think people like me who are actively dying from this disease with no hope of a cure are concerned that rebranding the ice bucket challenge will erase one of the only times that ALS was a household name.”
Navar, on the other hand, doesn’t take much issue with the way the university repurposed the challenge.
“I think it’s cool that they used it for a different cause. I don’t think anybody’s got a proprietary over it,” she says. “Maybe it becomes a platform for all the diseases. Maybe everybody comes up with their own ice bucket challenge as a bonding experience for that disease. It doesn’t have to be just one or the other.”
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However, Eby maintains that it’s important to save sufficient space for the trend’s original intention. Her statement to PEOPLE continues, “With the current state of medical research funding, it’s even more important we talk about ALS and other 100% fatal diseases, so I would have loved to see the university acknowledge where this trend started to educate their students who were likely too young at the time of the first one.”
Ultimately, Eby says she hopes that the school and its students take “this opportunity to share the history of the ice bucket challenge that’s allowing them to gain so much attention.”
And if the new Ice Bucket Challenge does happen to bring more attention to the original cause, Navar hopes funds will be handled in a way that can actually move the needle and transform ALS into something other than the grim diagnosis it is today.
“Every 90 minutes, somebody’s hearing what people heard 70 years ago, ‘You have two to five years to live.’ And it takes 18 months to two years to get diagnosed,” says Navar. “We can keep feeling good about activity, but activity does not form results.”
