While only a small part of the money raised through the challenge was used on the drug, it is still a major win for people diagnosed with ALS.
Editor's note: This article was originally published on October 5, 2022. It has since been updated.
Remember that challenge back in 2014 where everyone dumped ice water on their heads and challenged three other people to do it? Well, it wasn't just all fun. Called the ALS (amyotrophic lateral sclerosis) Ice Bucket Challenge, the widespread appeal and movement raised funds for research for Lou Gehrig’s disease. The video usually started with a person describing what they were about to do (dumping large amounts of ice water on themselves), pledging to donate some money to the ALS Association, and then nominating three other people to complete this challenge.
This challenge was one of the first few social media challenges on the internet that got clout on such a large scale. And while at that time, it did seem like the challenge was just for social media, it triggered a change large enough for it to be realized today, NPR reported. About $2.2 million of funds that were raised from the ALS Ice Bucket Challenge were pooled into creating a drug that the Food and Drug Administration (FDA) approved this week for the treatment of ALS, also known as Lou Gehrig’s disease. The drug approved is called Relyvrio and has been developed by Amylyx Pharmaceuticals. It is an oral medication that can be used as a standalone treatment or can be added to other approved treatments too, according to Mashable. "This approval provides another important treatment option for ALS, a life-threatening disease that currently has no cure," Dr. Billy Dunn, director of the Office of Neuroscience in the FDA's Center for Drug Evaluation and Research, said in a statement.
It was hard to miss the ALS Ice Bucket Challenge in 2014 that set out to raise money for disease research. And it paid off. A new treatment was funded with $2.2 million in donations. https://t.co/M94X7YnhvE— NPR (@NPR) October 3, 2022
For all the people who did the challenge, this is clearly a win. "We thank the millions of people who donated, participated, and enabled us to invest in promising therapies like AMX0035 that will immediately help people living with ALS," said Calaneet Balas, president, and CEO of the ALS Association. "This is a victory for the entire ALS community, which came together to advocate for early approval" of the treatment. While the drug doesn’t cure the neurodegenerative disease but it does slow down the effects. In a first for social media, the ice bucket challenge “dramatically accelerated the fight against ALS,” Balas confirmed.
This challenge enabled the ALS Association to increase its annual funding for research by 187%, according to the ALS Association. “Five years after the Ice Bucket Challenge soaked the world, the pace of discovery has increased tremendously, bringing ALS researchers closer than they have ever been to real breakthroughs in diagnosing, treating, and eventually curing this disease,” said Balas. In totality, the trend raised around $115 million, a large amount of money that will be used to fund 130 research projects in 12 different countries, as well as 40 potential treatments that are in development.
(1/5) AMAZING NEWS! If you took the Ice Bucket Challenge, you helped deliver AMX0035, the first newly developed treatment approved for ALS in years! THANK YOU! AMX0035 slows progression of ALS and extends life for people living with ALS. pic.twitter.com/OAg1PWFpos— The ALS Association (@alsassociation) September 29, 2022
Created by Pat Quinn and Pete Frates, both living with ALS and passed away in 2020 and 2019 respectively, the challenge quickly became viral. “We are thinking of Pat Quinn and Pete Frates," said Balas, "who championed the Ice Bucket Challenge and changed the trajectory of ALS forever.” It is their work that will change people’s lives for the better. The neurodegenerative disease stiffens muscles and can impair brain function until someone is no longer able to move, eat, speak or breathe. More than 72% of the respondents in an independently conducted survey of ALS researchers confirmed that they were able to get their funding approved or receive additional funding because of this challenge.
The company will move on further to study the efficacy and safety of the drug in the third phase of the trial, CBS reported. The CEO of the ALS Association, Calaneet Balas, is excited about the potential of the drug. She said, “We cannot allow perfection to stand in the way of real progress toward turning ALS from a fatal disease into a livable one. The FDA's own ALS Guidance acknowledges that people with ALS are willing to accept greater risk for the possibility of some benefit.” Adding, “People with ALS and their loved ones deserve better and the FDA has the tools to accomplish this with urgency.”