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Aug 8, 2024 · David L. Ryan/The Boston Globe via Getty Images. It’s been 10 years since the Ice Bucket Challenge washed across the internet, bringing people together to spread awareness of amyotrophic lateral ...
Jul 25, 2024 · The Ice Bucket Challenge went viral in the summer of 2014, raising tens of millions of dollars for ALS research By Lauren Petty • Published July 25, 2024 • Updated on July 25, 2024 at 4:54 pm ...
- Lauren Petty
- 2 min
A person performing the ALS Ice Bucket Challenge. The Ice Bucket Challenge, sometimes called the ALS Ice Bucket Challenge, was an activity involving the pouring of a bucket of ice water over a person's head, either by another person or self-administered, to promote awareness of the disease amyotrophic lateral sclerosis (ALS, also known as motor neuron disease or Lou Gehrig's disease) and ...
- Overview
- An influx of funding changes the pace of research
- Greater collaboration changed the game
- There’s still more work to be done
The 9-year-old viral social media movement's success continues to be felt today: new gene discoveries, more treatment options, and improved care. Researchers say they're closer than ever to finding a cure for the disease.
Why is this man dumping a bucket of water on a friend's head while another person records them? These people were participating in the ALS Ice Bucket Challenge in the summer of 2014, a viral sensation that raised money for research into the fatal disease. Its impact is still felt today.
In the summer of 2014, the ALS Ice Bucket Challenge quite literally drenched the internet, quickly becoming what is now considered the largest social media movement in medical history.
Seventeen million people uploaded videos of themselves to Facebook dumping buckets of ice water over their heads and challenging friends, family, and even celebrities to do the same. The viral sensation raised $115 million in just six weeks, and boosted critical awareness for a fatal disease that has few treatments and no cure—not yet at least. As the effects of the Ice Bucket Challenge continue to ripple, hope is on the horizon for ALS patients and their families.
“The Ice Bucket Challenge was incredible and unprecedented for any disease charity,” says Neil Thakur, chief mission officer of the ALS Association (ALSA). “When you have more money to invest, you have more chances for things to work—and that's what we're seeing now.”
ALS, or amyotrophic lateral sclerosis, is a disease that degrades nerve cells in the brain and spinal cord over time, leading to loss of muscle control and and, ultimately, inability to talk, move, eat, and breathe. Also known as Lou Gehrig’s disease, ALS affects more than 31,000 people in the United States, estimates show; most live only two to five years after symptoms develop.
Despite being described for the first time more than 150 years ago, ALS continues to puzzle scientists.
Researchers are still trying to understand how the disease works, what biomarkers can help diagnose and treat it, and the role genetics plays—both in the 10 percent of cases where people have a family history of the disease and the 90 percent of those without that family history who suffer from sporadic ALS. A better understanding of what genes contribute to the disease could ultimately lead to the development of effective treatments.
It took 126 years to find the first therapy for the disease: Riluzole, which can extend patients’ lives by about three months. That was in 1995—and it took 16 years to approve another treatment, Nuedexta in 2011.
Then the Ice Bucket Challenge happened in 2014.
It was both an exhilarating and exhausting several months for the ALSA. Brian Frederick, a spokesperson for the organization, says rooms were overflowing with checks, while organizations raising money to fight other diseases were calling desperate for advice to start their own campaigns. Accusations of slacktivism poured in as the organization struggled to quickly decide where and when to invest all the money. Despite the chaos, funds began to make their way to the ALS community a month after the challenge went viral.
As a result, ALS treatment clinics in the U.S. nearly doubled, and funding from the U.S. National Institutes of Health rose from $49 million a year in 2015 to a projected $220 million in 2024. Funds from the challenge also helped scientists at Dartmouth launch a research program to study environmental causes of ALS; in 2018, they found the disease is associated with increased mercury levels in toenails.
Since the Challenge’s inception, ALSA has committed more than $118 million to global scientific collaborations that have changed the course of ALS research.
“Early in my career someone said to me that ALS genetics is a full-contact sport. It can be very competitive, but one tremendous thing the Challenge did is bring more and more groups together,” Landers says. “And in genetics, more is always better.”
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Ice Bucket funds made it possible to add an American arm to Project MinE, a global consortium for ALS genetics research that is the largest whole-genome sequencing effort of its kind. With the help of hundreds of researchers from dozens of institutions, the group, led by Landers, was able to identify a mutation related to ALS in the NEK1 gene, which plays a role in DNA damage repair and other cell functions. The group also discovered a mutation in the gene KIF5A that causes ALS.
Meanwhile, the ALS Research Collaborative (ARC), run by the nonprofit ALS Therapy Development Institute, also hit the ground running in 2014 after receiving funds from the challenge. It began collecting clinical and longitudinal data from more than 800 ALS patients and is now the longest-running natural history study of the disease, according to Carol Hamilton, vice president of development at ALS TDI.
Just last month, the group launched its ARC Data Commons program, which gives anyone in the world access to that data and will help scientists develop treatments to help slow, stop, or reverse ALS at a much faster pace.
Despite the Ice Bucket Challenge’s tsunami-like impact on ALS research, scientists agree much more work is needed to cure the disease. The first step: make ALS livable by 2030.
“We have to shift our science to keep up with the pace of change,” Thakur says. “Now that there are new therapies, we have to figure out how these therapies can work together, as well as how people can afford them and get treated in a timely manner. Both of those things are really hard.”
Even before ALS took his son’s life, Quinn understood that it takes a village to help ALS patients navigate the complexities of the medical system. For years he’s been working closely with Quinn for the Win to raise money for ALS research and ALS members of his Yonkers community, ensuring their journey with the disease isn’t any harder than it needs to be.
“Pat would say, ‘Every day, no matter how much adversity you think you may have, find a reason to find your smile,’” Quinn says. “We don't want you to have a death sentence. We want to be able to say, ‘Yes, you have ALS, but there’s treatment and you can live a normal life.”
- Katie Camero
The ALS Ice Bucket Challenge was a global phenomenon that changed the fight against ALS forever. In the summer of 2014, three young men living with ALS took the ALS Ice Bucket Challenge and inspired people around the world to dump ice water on their heads and donate to an ALS organization. Over 17 million people participated in the Challenge and raised $115 million for The ALS Association.
Jul 3, 2017 · The Ice Bucket Challenge is a campaign to promote awareness of amyotrophic lateral sclerosis (ALS) — also known as Lou Gehrig's disease — and encourage donations for research.
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ALS United Rocky Mountain is recognizing the significant impact the Ice Bucket Challenge had for the ALS community by continuing to raise awareness and bring much-needed funding to continue the progress made over the past 10 years and support your local ALS community. You can participate again or for the first time by creating your own Ice ...
