The Ice Bucket Challenge is back, minus ALS. Not everyone is thrilled about the rebrand

In so many ways, 2014 was a simpler time.

We were still six years out from the pandemic. The U.S. had its first Black president. Gen Z hadn’t yet started influencing our fashion, so we were still rocking skinny jeans and ankle socks. And Gen Alpha hadn’t yet been unleashed on the skincare section at Sephora because, well, most of them hadn’t been born. 

But even in a pre-TikTok world, we still managed to join forces, and film ourselves dumping buckets of ice water on our heads for a good cause.

The ALS Ice Bucket Challenge, as it was called, was a global phenomenon in the summer of 2014. More than 17 million people around the world dumped ice water on their heads and donated money to foundations supporting ALS (amyotrophic lateral sclerosis), according to the ALS Association in the U.S.

Celebrities, politicians and athletes all participated and challenged each other, including Bill Gates, Oprah Winfrey, Taylor Swift and former U.S. president George W. Bush. (Actor Leonardo DiCaprio challenged then-prime minister Stephen Harper, who declined, but did make a donation.)

In Canada alone, more than $17.2 million was raised between Aug. 6 and Dec. 31 of that year, according to the ALS Society of Canada, and more than $220 million US was raised globally.

And now, thanks to TikTok, along with with the help of influencers, the Ice Bucket Challenge is back after 11 years. But this time, it’s raising funds and awareness for youth mental health. As of Friday morning, just over $341,000 US had been raised in the new “Speak Your Mind” ice bucket challenge, which raises funds for the U.S. non-profit Active Minds.

Former NFL players Peyton Manning and Eli Manning have already taken part, and so has Today host Jenna Bush Hager. Some of TikTok’s most popular influencers have done it, including James Charles, MrBeast and Hayley Baylee. There are more than 116,000 videos tagged “ice bucket challenge” on TikTok so far.

For some, seeing the ice bucket videos in their feeds again may bring about a sense of nostalgia. But within the ALS community, where there’s still no cure, the challenge resurfacing for a new cause has been more divisive.

“Watching people steal the ALS Ice Bucket Challenge for a different cause when ALS still doesn’t have a cure and is 100 per cent fatal, come on,” wrote Brooke Eby, an ALS advocate with nearly 500,000 followers between TikTok and Instagram, in a video she posted this week.

“There is a lot of other mental health awareness on the internet, but this was the only thing that brought attention to ALS,” said another influencer in a TikTok video.

“I appreciate their spreading awareness for mental health but totally cringey in how they appropriated this from ALS with zero accountability. Not cool at all,” wrote a commenter on an Instagram post by the ALS Association.

An old challenge, a new take on it

ALS is often referred to as Lou Gehrig’s disease, named after the late New York Yankees ballplayer. It’s a progressive disease that affects the brain’s nerve cells and the spinal cord, slowly paralyzing people. Eventually, people with ALS lose the ability to walk, talk, eat, swallow and breathe.

There are few effective treatments and no cure, notes the ALS Society of Canada on its website. About 4,000 Canadians are currently living with ALS, according to the organization, and 80 per cent of people living with the disease die within about two to three years from diagnosis.

The ALS Ice Bucket Challenge started in 2014, when professional golfer Chris Kennedy dumped ice water on his head to support a family member who had recently been diagnosed, according to the ALS Association. Momentum started to build as Kennedy challenged people, who challenged more people, and then it took off when Pat Quinn and college baseball player Peter Frates took part.

The challenge was an important moment for building awareness about the disease and fundraising for people affected by ALS, Tammy Moore, CEO of the ALS Society of Canada, told CBC News in a statement. And while there have been advancements in the quality of care in the last decade, Moore emphasized that there’s still no cure.

“While the outpouring of support in 2014 was significant, it was a small fraction of what is necessary to address the realities of an incredibly complex disease that can take lives within two to five years of diagnosis, and emotionally and financially devastates families,” Moore said.

“With that in mind, we hope people will remember the original ALS Ice Bucket Challenge campaign and support both important causes.”

Mental health challenge started by students

The new challenge was started by students at the University of South Carolina to spread awareness about mental health and suicide prevention. Wade Jefferson, founder of the university’s MIND club (Mental Illness Needs Discussion), said in a statement last week they were inspired by how powerful the original ice bucket challenge was.

“We wanted to bring that same energy to mental health. Watching it take off — seeing people we admire, like Peyton Manning, join in — has been surreal. We’re proud, grateful, and just excited to see how far it’s gone and continue to go,” he said.

The ALS Association in the U.S. wrote in a statement last week that it was “thrilled” to see the spirit of the challenge live on in new forms of activism, but added that ALS is still fatal and “we urgently need a cure.”

In a follow-up post to her first viral video about the challenge, Brooke Eby — who has ALS — said she’s not debating that one cause is more important than the other. But she says that it’s important to remember how the challenge started — with a handful of people who had ALS, all of whom have since died.

“I love seeing colleges and students taking on a cause,” Eby said a TikTok video posted Thursday.

“But I think to do the exact same style of fundraiser, without any mention of ALS, where people like me who are actively dying from this disease, with no hope, the concern is that by rebranding the ice bucket challenge about any other cause will erase the one time that ALS was a household name.”