Anthony Senerchia, whose struggle with the motor disease amyotrophic lateral sclerosis (ALS) was an early inspiration for the viral “ALS Ice Bucket Challenge,” died November 25 after a 14-year long battle with the disease, according to an online obituary. He was 46.
Senerchia, from Pelham, N.Y., was diagnosed with the disease in 2003, shortly after marrying his wife Jeanette Hane. He was given only a few years to live, but he powered through the disease for the next 14 years, his obituary reads.
“It’s a difficult disease and tough when you’re losing,” his wife Jeanette Senerchia told the Journal News. “Your body is failing you. But he was a fighter…He was our light. He made our life better.”
Senerchia created the Anthony Senerchia Jr. ALS Charitable Foundation, which helped fund research at the Columbia Presbyterian Medical Center for ALS research and aided families affected by the disease, according to his obituary.
But he was most well known for being the genesis of a global sensation - the ALS Ice Bucket Challenge, which tasked people with pouring buckets of icy water over their heads both to raise awareness of ALS and to encourage donations into cures and treatments.
It all started when Jeanette’s cousin Chris Kennedy, a professional golfer, challenged her and a few others to take part in an ice bucket challenge in 2014.
“He sent it to me as a joke and then it turned into something extraordinary,” Jeanette told the Journal News.
Eventually, word of the challenge spread through the small town of Pelham, as people began to associate the challenge with ALS and Jeanette’s husband Anthony, according to TIME. Eventually, the challenge spread to another man living with the disease named Pete Frates. He posted a video to his large social media following, and “that’s when the campaign really became viral,” TIME reported.
Over the next several weeks, the challenge became massively popular, resulting in an estimated 17 million videos and the collection of about $200 million for ALS research and advocacy organization, reported ALS News Today. Millions of ordinary people shared and made videos, and famous figures including Chris Pratt, Ben Stiller, Stephen Spielberg, Taylor Swift and many others participated too.
“We just have so many amazing people in our community. I can’t even tell you. They’re just so generous, and they just want us - have good things to come to other people who are hit with this disease,” Jeanette told PIX 11 in 2014, as the viral sensation was still raging.
Senerchia survived another three years after the beginning of the challenge, long enough to see the original ice bucket used by his wife inducted into the Smithsonian Institution’s National Museum of American History.
“Anthony will be remembered as a fireball who tried everything in life,” his obituary reads. “He was family oriented, generous and always ready to lend a helping hand. He was a great husband, a proud father, a loving son and a great brother. He will be missed by everyone who knew him.”