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A viral trend is back. Has ALS research progressed since the first Ice Bucket Challenge?

Former Tennessee Titans running back Chris Johnson put ALS and the Ice Bucket Challenge back in the spotlight in late June when he announced his diagnosis on “Good Morning America.”

FILE - Former Tennessee Titans running back Chris Johnson visits the field during the second half of an NFL football game against the New York Jets, Sept. 15, 2024, in Nashville, Tenn.
FILE - Former Tennessee Titans running back Chris Johnson visits the field during the second half of an NFL football game against the New York Jets, Sept. 15, 2024, in Nashville, Tenn. Read moreGeorge Walker IV / AP

Some of the country’s biggest football stars have brought back a decade-old internet trend where people douse themselves in ice water to raise money for research into amyotrophic lateral sclerosis, a neurodegenerative disease known as ALS.

Former Tennessee Titans running back Chris Johnson put ALS and the Ice Bucket Challenge back in the spotlight in late June when he announced his diagnosis on “Good Morning America.”

“Years ago, the ALS Ice Bucket Challenge united millions of people around the world around one cause and helped change the fight against this disease,” Johnson wrote on social media after his announcement. “Today, I’m asking you to help me do it again.”

It was a callback to the original challenge, which raised over $100 million for ALS research when it originated in 2014, and is now described as one of the more notable success stories in an age of social media-driven activism.

More than a decade later, experts say that windfall transformed ALS research by drawing more scholars into the field and powering breakthroughs in ALS diagnosis and care. They hope a revival of the trend might do the same as researchers continue to hunt for a cure.

“We can do so much more now than we could then,” said Eva Feldman, a professor of neurology and director of the Scott Pranger ALS Center at the University of Michigan.

The simple premise of the Ice Bucket Challenge in 2014, to film yourself getting an icy splash, make a donation and nominate three friends to do the same, was primed to spread across the internet and came as Facebook debuted hashtags and “trending” topic lists to boost viral videos. Celebrities, politicians and around 17 million people participated in the trend, according to the ALS Association.

“It brought extreme recognition to the disease,” Feldman said.

The swell of attention and funding from the Ice Bucket Challenge “spawned a generation of young investigators” who were newly drawn into ALS research, said Nicholas Maragakis, a professor of neurology at Johns Hopkins University.

Experts said among the biggest breakthroughs in the past decade include the identification of over a dozen genes associated with ALS.

Mutations in genes can cause cells to produce abnormal proteins that damage neurons and can lead to ALS, and identifying which genes carry these mutations has helped scientists understand the disease. New treatments for ALS include drugs that target these faulty genes.

“Many of the genes we’ve identified are directly related to [funding from] the Ice Bucket Challenge,” said Calaneet Balas, the CEO and president of the ALS Association.

Other areas where ALS research has progressed include the use of stem cells to model the behavior of neurons to better understand how they deteriorate, and the identification of more biomarkers, such as chemicals in blood or spinal fluid, associated with ALS.

Those indicators can allow doctors to gauge the presence or severity of ALS in a patient, which has helped with diagnosing patients as well as evaluating the effectiveness of drugs in clinical trials.

“We understand the disease much better than we did in 2014,” Maragakis said.

The quality of care for ALS patients has also increased by “light-years,” Balas said. Research into brain implants has allowed some people with ALS to communicate, work and even reclaim their voices. Johnson gave his GMA interview using a device that uses recordings of his voice to synthesize speech, according to the program.

“To be able to do all of that did not exist 10 years ago,” Balas said.

The ALS Association says more work will be needed. A study last year funded by the ALS Association that analyzed a region of Italy projected that ALS prevalence could increase in the U.S. by around 16 percent from 2024 to 2040 — to an estimated total of around 42,000 cases — as the country’s population ages and ALS patients live longer.

Further funds raised could go toward larger-scale studies on risk factors of ALS and ways to make the disease more livable, Feldman said.

A cure for ALS may not be imminent, and there “won’t be one silver bullet,” Balas said. But she added that she is optimistic about making ALS livable with further advancements in patient care and treatment.

The internet has changed in the years since the Ice Bucket Challenge’s heyday. But even if this revival does not eclipse the original challenge, Balas said it is reminding the public about ALS, and the power of a bit of viral goodwill.

“I think it’s wonderful to have the resurgence, whether it matches what happened in 2014 or not,” Balas said.