Remember the Ice Bucket Challenge? It's back.
People participate in the "Ice Bucket Challenge" in Gloucester, MA during the last annual "Plunge 4 Pete" on Dec. 28, 2019, what would have been Pete Frates' 35th birthday. The fundraiser started in 2012 after Frates' diagnosis of ALS, and eventually helped popularize the Ice Bucket Challenge. Photograph by Jessica Rinaldi, TheThe 2014 social media trend put the spotlight on unanswered questions and needed treatments for ALS. Will its return help? We asked the father of one of the original Ice Bucket Challenge founders.
More than a decade after the viral trend first got its start, thousands of people are dusting off their buckets and dumping ice water on their heads all over again—but this time, for mental health.
The viral 2014 Ice Bucket Challenge raised $115 million in six weeks for what was, at the time, a severely neglected disease—amyotrophic lateral sclerosis (ALS), which degrades nerve cells in the brain and spinal cord over time, leading to loss of muscle control and, ultimately, the ability to talk, move, eat, and breathe. But the global social media phenomenon did more than that. It forever changed the trajectory of ALS, leading to the discovery of disease-specific genes and treatments, greater scientific collaborations, and technology that improved patients' quality of life.
(A decade later: How the ALS Ice Bucket Challenge made a lasting impact.)
But how did those close to the original challenge feel about the revamped version—and what progress has been made since? We spoke with Patrick Quinn, father of the late Pat Quinn, one of the original Ice Bucket Challenge's three co-founders, as well as Brian Frederick, chief marketing and communications officer for the ALS Association (ALSA), to find out. A revamped social media challenge
After losing friends to suicide, Wade Jefferson, a student at the University of South Carolina, wanted to work towards squashing stigmas around mental health. He started the college's Mental Illness Needs Discussion (MIND) club, and thought a reimagined ice bucket challenge could breathe new life into mental health advocacy. Thus, the recent #SpeakYourMIND Challenge was born.
The campaign, which launched March 31, has raised nearly $420,000 for Active Minds—the largest nonprofit in the United States that's working to change mental health norms among teens and young adults. It has even attracted some high-profile attention, including from former NFL quarterback Peyton Manning and TODAY show host Jenna Bush Hager.
While the campaign began to pick up some steam, some feared the revamped social media trend might take away from spotlighting the challenges associated with ALS. At the same time, people on social media were tagging the ALSA in their videos, connecting the original driving factor behind the trend with mental health.
Shortly after, the ALSA and Active Minds joined forces to raise awareness for both causes, using the challenge to bring attention to the fact that ALS doesn't just affect people physically, but emotionally as well—a reality that isn't often discussed.
'Even in ALS support groups, mental health is something that was never brought up,' says Quinn. 'It was always physical. But when you really peel back each of one of those negatives, how much mental impact does that have?' What we know about mental health in ALS patients
Also known as Lou Gehrig's disease, ALS affects roughly 30,000 people in the U.S., and most live only two to five years after symptoms develop.
Because much more progress is needed to address patients' debilitating loss of function, Quinn feels like the mental health of these patients has been put on the back burner. Even though ALS was first identified more than 150 years ago, few studies have analyzed how the disease impacts mental health and vice versa.
At least one questionnaire found that as physical impairment worsens among those with ALS, so does depression. Other self-reported surveys show that up to 64 percent of ALS patients feel depressed and 88 percent feel anxious. A 2019 study even found that poorer emotional well-being was associated with faster disease progression. Ice Bucket Challenge co-founders Pat Quinn (left), Pete Frates (center), and Pete's wife Julie and daughter Lucy, along with Red Sox players and staff, take part in the relaunch of the Ice Bucket Challenge on July 31, 2015 at Fenway Park. Photograph by Arthur Pollock, MediaNews Group/Quinn, who watched his son battle ALS for seven-and-a-half years, said it can be difficult to recognize how people with the disease feel, especially once they lose the ability to speak, and even more so 'because they have a funny way of hiding it to avoid being a burden on their families.'
(9 simple ways to boost your mental health, according to science.) New technology advancing ALS treatments
But hope is on the horizon for ALS patients and their families. A study published in January found that Qalsody—the first gene-based therapy for ALS approved by the FDA in 2023—not only slows the progression of a rare form of the disease, but also helps restore patients' function.
Companies are also leveraging AI tools to search through massive datasets to pinpoint biological targets that can help accelerate drug discovery and development, says Frederick. And advancements in technology are continuing to help ALS patients who have lost the ability to speak to communicate with others.
'There are many more things now that make it easier for them to not just give up,' says Quinn, adding that he's grateful that the #SpeakYourMIND Challenge has opened his and others' eyes to the importance of mental health for ALS patients.
'ALS doesn't have a face until it comes into your house' he says. 'One of Pat's big things before he passed is, no matter how bad things get, find a reason to find your smile—and just keep going.'
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