The ALS Ice Bucket Challenge that has spread around the world like wildfire thanks to social media was inspired by Pat Quinn, a gutsy Irish American from Yonkers who refused to lie down when he was diagnosed with the killer disease last year.
Celebrities, politicians and people young and old and from all walks of life are dousing themselves with icy water to raise funds and awareness for a horrid illness that is desperately in need of attention. ALS, also known as Lou Gehrig’s disease, eats away at the body’s muscle system and brain nerve cells, and there is no known cure – but that doesn’t faze Quinn.
“I wasn’t about to take the diagnosis lying down,” Quinn, 31, told the Irish Voice during a phone interview, conducted after he spoke to a high school football team whose members promptly dumped ice buckets on themselves after his inspirational talk.
Quinn, a newlywed whose father Patrick came to the Bronx from Newry, Co. Down when he was a teenager, admits that he’s taken aback by the massive global reaction to a fundraising effort that started out small.
Not long after his diagnosis in March of 2013 Quinn became friendly with another young ALS patient, Boston College baseball player and graduate Pete Frates. They decided to pool their contacts to raise awareness and funds for ALS research, giving rise to the birth of the Ice Bucket Challenge.
Frates has since been confined to a wheelchair and is unable to speak, and Quinn is full of praise for his friend.
“Pete was diagnosed a year before me and his progression has been much faster than mine. We connected because it’s not normal for people so young to have ALS,” said Quinn, noting that the average age for diagnosis is 50 and above.
“We both chose to fight instead of sit back. Our networks are big and we know a lot of people. He knows more than me.”
Quinn, a graduate of Iona College in New Rochelle, where he was a standout athlete, spread the word through there and also via the Irish enclave of McLean Avenue in Yonkers – Rory Dolan’s bar and restaurant was one of the first to host a fundraiser, back in December of last year, to get the word out.
“The Ice Bucket Challenge kind of first ran through my network and then got to Boston where Pete is, and when it touched his network it just went viral from there. Pete knows guys who play pro sports so some athletes took the challenge, and it really went from there.”
The rest is history – quite literally. The ALS Association based in Washington, D.C. reported more than $70 million in new donations as of Sunday, August 24 – which doesn’t include the millions donated to other advocacy groups in other parts of the world. In Ireland, for instance, more than €350,000 ($460,000) has been raised for the Irish Motor Neurone Disease Association.
“It’s been amazing, one of the craziest things ever. It’s definitely the craziest thing I’ve been a part of,” Quinn says of the Ice Bucket Challenge. He himself has been featured talking about the craze on "Entertainment Tonight," and he appeared on "Good Morning America" on August 15 to help dunk the anchor team.
The sporting world continues to take notice. Quinn was with Illinois Governor Pat Quinn and members of the Chicago White Sox when they took the Ice Bucket Challenge in his honor, and was recently interviewed by the popular daytime sports radio host Mike Francesa.
It’s the rare celebrity at this stage who hasn’t taken part in the phenomenon. Quinn has watched as many of them as he can. “I saw Leonardo di Caprio on Facebook this morning which was pretty cool,” he said.
Quinn could never have imagined himself in this position while growing up in Yonkers, attending Iona Prep and Iona College, where he played rugby for four years and a host of other sports. He and his brother Daniel grew up with a strong awareness of their Irishness – “always the parades and what not, hanging around McLean Avenue,” Quinn says.
He’s never been to Ireland, but Daniel was a recent visitor. “I’m sorry I didn’t go with him. I’d like to get there someday,” Quinn added.
It was after a softball tournament in 2011 that he first noticed a twitching in his left arm. He attributed the shake to intense athletics, but when it persisted he sought medical attention.
It took over a year and a half to get to the bottom of Quinn’s medical picture, in part because of his young age. He attended the Hospital for Special Surgery in New York for every kind of test imaginable, and when all other conditions were ruled out the scariest one loomed – ALS.
He got the dreaded confirmation at Johns Hopkins in Baltimore in March of 2013.
“At that point I kind of already knew,” Quinn recalled.
“It was weird, it was very tough,” he says of receiving the official word. “At that point I had done a lot of research on my own. A lot of my symptoms were pointing in that direction. I was just avoiding the day that I would know for sure.
“I didn’t really talk about it much to people and kept to myself. So I guess it was more of a shock to other people as opposed to me. But hearing it was obviously devastating.”
After the initial shock somewhat subsided, Quinn and his then fiancée, Jenn, and their family and friends got to work to raise awareness and research funds. They created a website, quinn4thewin.com and hosted a number of fundraising events and concerts. Many Irish bands in the Yonkers area continue to donate their time to Quinn’s cause, and together the several fundraisers already hosted by Quinn for the Win have raised thousands.
“Everyone has been terrific, Rory Dolan right from the start and his bartenders who continue to do the Ice Bucket Challenge and raise awareness. We’re hoping to get a dunk tank at Rory’s for the McLean Avenue Fall Festival on September 13 to raise more funds,” Quinn says.
Though his life has been turned upside down by the ALS diagnosis, Quinn refuses to be ruled by it. He and Jenn, who he met in Iona and started dating after graduation, were married on July 5 in Chappaqua, NY and the families enjoyed a great day out.
“It was beautiful,” Quinn said. “Jenn is just wonderful. She never lets me be a baby about this, and she keeps me strong.”
Physical strength is proving harder to come by for Quinn as the days progress. He stopped working at the end of last year to concentrate on his ALS fundraising and advocacy work.
“It’s gotten a bit tougher for me recently,” Quinn shared.
“My day to day activities are much more difficult. My brother is taking care of me a lot more because it’s tough to get my shoes on and my shirt on, brush my hair and brush my teeth. Stuff like that I really can’t do.
“But at the same time I always say my progression isn’t as fast as other patients.”
Present treatment options for ALS patients are extremely limited, which means that Quinn isn’t on a regimen of several drugs.
“The problem with ALS is that there’s no treatment option. There’s only one prescription they offer that they say extends your life by three to nine months. So that’s why we do so much fundraising,” he says.
“It’s not a fair treatment option for someone with such a devastating disease. So we’re trying to raise as much money and awareness for research as possible.”
There are several upcoming events on the Quinn for the Win calendar, including “Quinnstock” on Saturday, September 20 at Coyne Park in Yonkers featuring live music, food – and of course, the Ice Bucket Challenge.
For more information, visit quinn4thewin.com
Watch Quinn's interview with NBC: