Remember the Ice Bucket Challenge? Come back, but some people in the ALS community are unhappy

In many ways, 2014 was a simple period.

We've been six years from the pandemic. There is the first black president in the United States. General Z hasn't started to influence our fashion yet, so we're still shaking skinny jeans and ankle socks. And General Alpha has not been released in Sephora's skin care department, because, most of them are not born.

But even in the pre-Tiktok world, we still managed to unite and pour a bucket of ice water over our heads.

Called the ALS Ice Bucket Challenge is a global phenomenon in the summer of 2014. According to the ALS Association of ALS in the United States, more than 17 million people around the world dumped ice water on their heads and donated money to foundations that support ALS

Celebrities, politicians and athletes all engage and challenge 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 refused, but did donate.)

According to the Canadian ALS Association, more than $17.2 million was raised between August 6 and December 31 of that year, and more than $220 million in the United States were raised worldwide.

And now, thanks to Tiktok, Ice Bucket Challenge is back 11 years later with the help of influencers. But this time, it is increasing funding and awareness about youth mental health. As of Friday morning, more than $341,000 has been raised in the new Speak Your Mind Ice Bucket Challenge, which raised funds for nonprofit activities in the U.S.

Former NFL players Peyton Manning and Eli Manning have already played, so today Host Jenna Bush Hager. Some of Tiktok's most popular influencers have done this, including James Charles, MRBEAST and HAYLEY BAYLEE. So far, over 116,000 videos on Tiktok are marked “Ice Bucket Challenge”.

For some, seeing ice bucket videos in the feed again can bring nostalgia. But in the ALS community, there is still no cure and the challenges to new causes are even more divided.

“Watching people stealing the ALS Ice Bucket Challenge in a situation where ALS is still incurable and deadly 100% deadly,” wrote ALS Eby, an ALS advocate Brooke Eby, who has nearly 500,000 followers this week between Tiktok and Instagram, in a video she posted this week.

“There are a lot of other mental health awareness on the internet, but that's the only thing that has attracted the attention of ALS,” another influencer said in a Tiktok video.

“I thank them for their spread awareness of mental health, but totally cringing how they master this from a zero-responsibility ALS. Not cool at all,” wrote a commenter on the ALS Association’s Instagram post.

An ancient challenge, new perspectives on this

ALS is commonly known as Lou Gehrig's disease, named after the late New York Yankees baseball player. This is a progressive disease that affects the nerve cells and spinal cord of the brain and slowly becomes paralyzed. Eventually, people with ALS lose the ability to walk, talk, eat, swallow and breathe.

The Canadian ALS Association notes on its website that there are few effective treatments and there is no cure. The organization said about 4,000 Canadians currently live with ALS, with 80% of those with the disease dead within two to three years after diagnosis.

According to the ALS Association, the ALS Ice Bucket Challenge began in 2014 when professional golfer Chris Kennedy poured ice water on his head to support a recently diagnosed family member. As Kennedy challenged people more, the momentum started to build, and then it took off when Pat Quinn and college baseball player Peter Frates participated.

The challenge is an important moment for CBC News CEO Tammy Moore in a statement to raise awareness and fundraising for people affected by ALS. Despite the progress in the quality of care over the past decade, Moore stressed that it is still incurable.

“While the massive support in 2014 was significant, it was a small part of the need to solve an incredibly complex disease that could live within two to five years of diagnosis and destroy families emotionally and financially,” Moore said.

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

Mental health challenges that students start

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 Thinking Club (mental illness needs discussion), said in a statement last week that they were inspired by the strength of the original ice bucket challenge.

“We want to bring the same energy to mental health. Watching it take off – seeing people we admire, like Peyton Manning, join – join – we are proud, grateful and happy to see how far it has gone and how far it has continued.”

The ALS Association of America wrote in a statement last week that it was “excited” to see the spirit of challenge living in new forms of activism, but added that ALS is still deadly and “we desperately need a cure.”

In a follow-up to her first viral video, there is Brooke Eby of ALS that she is not arguing that one reason is more important than the other. But it is important to remember how the challenge started — a few people who have ALS, all of whom have died since then.

“I love seeing colleges and students accompany careers,” Ebby said.

“But I think the exact same way to raise funds without mentioning ALS, in which case people like me who are actively dying from the disease, have no hope and concern that by rebranding the ice bucket challenge for any other reason, ALS is a household name.”