To raise awareness of amyotrophic lateral sclerosis (ALS), of course, and to raise money for the ALS Association, which uses donations to fund research into treatments and a cure for ALS and to provide direct care services to people living with the disease. The Ice Bucket Challenge became a huge trend across social media in the summer of 2014, with more that 17 million people uploading videos of themselves taking the challenge. Once a person had performed the challenge — or often right before the icy soaking — they challenged someone else, or several others, to do the same. In some cases, the stated challenge is to either withstand the ice bucket or donate money to the ALS Association, but in many cases, the individuals who accept the challenge do both. No small number of celebrities has taken part in the Ice Bucket Challenge, including Oprah Winfrey, Steven Spielberg, Benedict Cumberbatch, Taylor Swift, Jimmy Fallon, LeBron James, and Lady Gaga. The initiative became a huge fundraising success, bringing in $100 million dollars in a 30-day period and $115 million over the summer. This represented a large increase in the ALS Association’s research budget, allowing it to dedicate more than $96.4 million toward its mission and more than $84 million in research projects. (1) The Ice Bucket Challenge continues to raise money and awareness today. Its birth as an ALS campaign started when professional golfer Chris Kennedy took the challenge himself, made a $100 donation to help fight ALS, and challenged his wife’s cousin, Jeanette Senerchia, of Pelham, New York, to take the challenge. At the time, Jeanette’s husband, Anthony Senerchia, had been living with ALS for 11 years; he died in 2017. Jeanette accepted, doused herself in icy water, and posted a video of it on Facebook. At first, the video and the cause spread locally among the Senerchias’s family members, friends, and neighbors. But eventually it reached the social media feed of Pat Quinn, of Yonkers, New York, who was connected to Pete Frates in Boston, Massachusetts. Both men have ALS, and they shared the challenge with their social followers. Frates died in December 2019 at age 34, and Quinn died in November 2020 at 37. Soon, the posts went viral across the United States and the world, and the campaign became the ALS Ice Bucket Challenge. In 2016, Project MinE, a large data-driven initiative funded by the challenge and donations from the association’s Georgia and New York chapters, turned out a big discovery. The project’s researchers found that mutations in a previously unknown gene, NEK1, are connected to ALS — a finding that could drive new treatment options. (2) NEK1 mutations are associated with 3 percent of ALS cases, and are present in both inherited and sporadic ALS. Further research on NEK1 is ongoing to understand its role in the disease. In April 2018, Pat Quinn began using a new technology called Project Revoice that allows him to speak in his own voice again. Quinn had lost the ability to speak due to ALS, and he communicated using eye-gazing technology that rendered text into the synthesized voice of his computer. Project Revoice recreated Quinn’s own voice, so when his computer “talks,” it sounds like him. The technology relies on having recordings of the individual speaking, and Quinn had not purposely recorded his own speech before losing his ability to speak. But he had been recorded numerous times in 2014 giving interviews about Ice Bucket Challenge. Those interviews provided enough of his unique voice and way of speaking to create a “cloned” synthesized voice that sounds like him. Project Revoice plans to open a “voice bank,” so that others living with ALS can record their voices before they lose the ability to speak. RELATED: How the World’s Hottest Pepper Landed a Man in the Hospital The origins of this new craze are attributed to sports writer Tom Haberstroh, whose mother was diagnosed with ALS in 2017. (4) The set-up is similar to the Ice Bucket Challenge: Accept the challenge, turn on the video camera, challenge three other people to take the challenge, then film yourself eating a raw hot pepper. Post your video to social media using the hashtag #ALSPepperChallenge. The Haberstroh family encourages hot pepper eaters to donate any funds raised to the ALS Therapy Development Institute, a nonprofit biotech company focused on discovering drugs to treat ALS.
