The New York man who helped create the ALS Ice Bucket Challenge says he's stunned by how quickly the movement has taken off and is heartened by the new conversation around the little-known disease.
Patrick Quinn, 31, of Yonkers, was inspired by a Pelham, New York family who performed the stunt, and he decided to recruit 50 friends to do the same in the name of ALS awareness. With each person nominating three other people to do the challenge, the act went viral.
"Within the first day or two, our whole news feed was covered in ice bucket challenges," he said.
Quinn knows how vital it is to raise awareness about the disease, which still has very little research surrounding it. He was diagnosed with ALS last March at the age of 30.
"It's a tough disease. The life expectancy for myself was changed from an old man to 2 to 5 years," he said. "It's been whirlwind, it's tough."
Quinn said he's lost muscle in his arms, upper back and neck. His legs are still functioning, but they're shaky and twitch frequently. He can no longer lift anything over his head without help.
"It's a lot of muscle loss and atrophy at this point," he said.
There's still no known cause for ALS, and that's why Quinn is hoping the increase in donations and funding from the ice bucket challenges will expand the research into the devastating disease. The ALS Association says it received $62.5 million in donations from July 29 to August 23 this year, compared to $2.4 million in the same time frame last year.
As for criticism that the viral stunt has gotten too narcissistic or self-involved, Quinn brushes it off as irrelevant.
"If people are doing it and mentioning ALS, even if they don't know what they're doing, they're still creating awareness," he said. "That was our initial intent. Awareness increases support, and more support equals more funding. More funding, hopefully more research."
"The momentum we're building for ALS right now is incredible," he said. "We're just gonna ride it out and hopefully raise as much money as we can."
To learn more about ALS or to make a donation, visit alsa.org.