But how did a campaign that has drawn in celebrities from Oprah and LeBron James to Bill Gates and Mark Zuckerberg actually start?
Chris Kennedy, a golfer in Sarasota, Fla., was nominated by a friend to participate in the Ice Bucket Challenge, which at the time, had nothing to do with ALS. The campaign was not tied to any specific charity, and participants would select a charity of their choice for donations. Kennedy’s friend had selected a charity that benefits a young child with cancer in the area. Kennedy, passing the challenge along, then selected ALS because a relative is suffering from the disease. Kennedy nominated his wife’s cousin Jeanette Senerchia, whose husband Anthony is the one suffering from ALS. Kennedy posted this video on July 15—what appears to be the first instance in which the Ice Bucket Challenge and ALS were linked.
“My cousin Chris sent me a message telling me to check my Facebook,” Jeanette Senerchia told TIME. “He nominated me as a joke because we bust each other’s chops. I was just going to donate money.” Instead, Senerchia, not to be outdone by Kennedy, accepted the challenge and posted the video on her Facebook page on July 16, nominating more people. In the beginning, they used the hashtags #takingiceforantsenerchiajr and #StrikeOutALS to support a newly-formed non profit and baseball tournament to honor Anthony.
Senerchia said their town of Pelham, N.Y., is small and the challenge started to spread like wildfire among everyone including their families and even high school friends. Soon, they couldn’t keep track of the number of videos. Eventually, it reached another man with ALS, Pat Quinn from Yonkers, N.Y. Quinn and Senerchia had a couple of mutual Facebook friends, and the campaign had spread to his online community. Quinn was diagnosed with ALS in March 2013.
Eventually, Quinn’s social network connected with Pete Frates in Boston, who has an especially large network of supporters, and is very involved with the ALS community. Frates was diagnosed a year before Quinn, and since the two had a lot in common (Frates was a former captain of the Boston College baseball team and professional baseball player in Europe) Frates has become a friend and mentor to Quinn. “Pete has been a mentor to Pat because he is a year ahead of him in progression,” said Nancy Frates, Pete’s mother.
When asked how Pete Frates gained such a large following, Nancy says, “If you met Pete you would know.” Frates has maintained friendships with people he’s met throughout his life, and they’ve all become part of his support network. Frates posted his own video on Facebook on July 31, using both the hashtags #StrikeOutALS and #Quinnforthewin—and that’s when the campaign really went viral.
The ALS Association says it started seeing an unexplained uptick in donations on July 29, and on Aug. 4, it was clear something was really taking off. The organization said Monday that it’s received more than $15 million from existing donors and 307,598 new donors. Nancy Frates said her family has received emails from other smaller ALS groups who have said their donations are also up. “Everyone is being made aware of this disease and the reality of it,” Frates said.
“What started out as a small gesture to put a smile on Anthony’s face and bring some awareness to this terrible disease has turned into a national phenomenon and it is something we never could have dreamed of,” Kennedy said.