Here’s What the ALS Community Actually Thinks About the Return of the Ice Bucket Challenge

TO BE HONEST, I never though we’d see the Ice Bucket Challenge again.

If you were in possession of a smart phone in 2014, you’re familiar with the trend. Somewhere on the internet there is (or was) a video of me, fully clothed, standing in my driveway, with my sister behind me holding an orange Home Depot bucket. I did the little spiel that was said more than 17 million times (that’s not a hyperbole) on Instagram, and in those days, Facebook:

“Hi, my name is Cori Ritchey and I was nominated for the ALS Ice Bucket Challenge by Megan Ritchey. I nominate [insert three names of high school friends I haven’t spoken to in 10 years]. You have 24 hours.”

And then my sister proceeds to dump the whole bucket of ice water over my head.

In early 2014, 3 men with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, Anthony Senerchia, Pat Quinn, and Peter Frates, started the Ice Bucket Challenge to spread awareness about ALS. Somehow, its particular brand of ridiculous and earnest was enough to spark one of the biggest social media trends the world has ever seen. And, as it turns out, it accomplished exactly what it set out to do.

The trend sparked over 10 billion views, and culminated $220 million to the ALS Association for research. Celebrities like the Rock, Chris Pratt, and even Bill Gates participated.

“Back in 2014, I was in my sophomore or junior year of college. At the time, I had no idea what ALS was,” says Allie Cruz, Boston-based speech pathologist. “Upon my mom’s diagnosis four years later, I actually felt more informed and empowered having done the challenge. Had it not been for that initial Ice Bucket Challenge, I don’t know if I would’ve been as knowledgeable of the disease or of the resources that were available to us.”

Last year, the Peter Frates Family Foundation, a nonprofit offering financial assistance to families dealing with ALS in honor of Frates, actually relaunched it on its 10 year anniversary. Less than a year later, it’s back again.

On March 31st, an Instagram account belonging to the University of South Carolina MINDs (Mental Illness Needs Discussion) club launched a campaign inspired by the ALS Ice Bucket Challenge, this time in the name of mental health awareness and advocacy. The video featured the club’s founder, Wade Jefferson getting water dumped on him, and went viral almost immediately.

It took off. Again. The group’s fundraising page has since skyrocketed past its original goal of $250,000, which they say they plan to donate to Active Minds—a Washington, D.C., based nonprofit whose mission is to bring mental health awareness to college campuses. In just three weeks, it’s sparked over 2,300+ donations and $40,000 to Active Minds, on top of the fundraising done by USC’s MINDs.

The trend has been picked up by celebrities like Peyton Manning and Mr. Beast, as well as some of TikTok and Instagram’s top creators. Some of these videos support both ALS and Active Minds, and some support just Active Minds.

For some who had been personally effected by ALS, the takeover initially cut a little to close to home.

“When I first saw that the trend was being used for a different cause, my initial reaction was not a positive one,” Cruz says. “ALS research is underfunded and the disease itself does not get the same recognition or support as more common causes, such as cancer,”

Others on social media have voiced similar reactions. “It wasn’t just a viral trend,” says the creator Mikey Stone, in a video that’s been viewed over 3.8 million times. “It was, and still is, a lifeline for awareness, funding, and hope.”

But in a statement, the Peter Frates Family Foundation said: “Pete recognized [the Ice Bucket Challenge’s] potential from the very beginning—he knew it was the perfect vehicle to shine a spotlight on a critical cause. What began as a simple gesture became a global call to action, not only raising awareness for ALS but also opening up important conversations about physical and mental health. Today, this movement continues to inspire a new generation. It’s a powerful reminder of the good that can come from social media, the beauty of selflessness, and the incredible strength we find when we unite for a common purpose.”

Even Brian Frederick, Chief Marketing and Communications Officer at the ALS Association had good things to say about the resurgence, noting that mental health is a big issue among those dealing with ALS among the family members and caretakers around them, and both issues deserve a spotlight. “We would never want to take away raising awareness and funds for mental health. We just want to ensure that everybody remembers that ALS still has an urgent need for treatments and a cure.”

It’s where Cruz landed, too. “Having been a daughter of someone with ALS, I can tell you firsthand that the mental and emotional toil the disease takes on the individual with ALS and their families is grave. The fact that these two challenges are now being linked together may even support a collaboration between the two resulting in more mental health support for the ALS community.”

Ultimately, the general response appears to be appreciation for the challenge itself, and all it has brought to the ALS community.

“The more I thought about it, the resurgence of the Ice Bucket Challenge, whether it be marketed for ALS or not, is still creating conversation about ALS. They are encouraging participation for both causes and the resurgence of the event, I think, is more beneficial than having let the trend die in 2014,” says Cruz.

“Without the challenge, people impacted by ALS, including my mom and our family, wouldn’t have access to vital, and free, resources… When I tell you that our family’s life wouldn’t have been the same without them, I mean it from the bottom of my heart.”