When people look back on the summer of 2014 and how it manifested in terms of pop culture, one of the things that we’re going to remember is the skyrocketing popularity of the Ice Bucket Challenge. What started out as a fundraising activity for a variety of good causes, the Cold Water Challenge, upped its ante to include ice cubes in late June on the Golf Channel. Then, in mid-July, golfer Chris Kennedy challenged his cousin Jeanette Senerchia, a woman in Pelham whose husband Anthony was suffering from amyotrophic lateral sclerosis (ALS). So began the close association of the chilly stunt with the quest to find a cure for the deadly neurodegenerative disease.
Former Boston College baseball star Pete Frates, who has ALS, immediately began Tweeting about Senerchia’s Ice Bucket Challenge. At that point, “We picked up on it,” says 31-year-old Yonkers resident Pat Quinn, who was in Highland last Saturday for a Crossfit Challenge fundraiser at Crossfit 299. The former Iona College rugby star has been doing all sorts of athletic-themed fundraising events for the ALS Therapy Development Institute since being diagnosed himself with ALS in March of 2013: golf outings, three-on-three basketball tournaments. But nothing that he had done before took off even remotely like the Ice Bucket Challenge.
Collaborating with Frates, Quinn enlisted his online support network to pump up the Challenge. Spreading out in all directions from the sports world where it began, it suddenly went viral on YouTube, propelled by the rule that each challenged individual must either undergo the icy ordeal or make a $100 donation to ALS research within 24 hours (most do both), and then challenge at least three more people. Within a matter of weeks, millions of videos were posted of ordinary people and celebrities alike getting doused with ice water and urging their friends to donate to ALS-related charities.
Here in the mid-Hudson, for example, indie songstress Amanda Palmer, who lost a brother to ALS, made a video of herself and several students getting iced on the Bard College campus, where she was an artist-in-residence this summer. Palmer challenged her husband, superstar fantasy author Neil Gaiman, who at the time was in drought-stricken California. So the next day Gaiman added his ice cubes to a bucket of seawater from the Pacific and suffered his dousing on a beach, in turn challenging A Game of Thrones author George R. R. Martin. And so on.
Within two months, the ALS Association had received more than $100 million in donations, and the ALS Therapy Development Institute, which Quinn describes as “the world’s largest ALS research institute,” had received more than $3 million. “It was a wild couple of weeks,” he says, noting that the summer months were the only likely season to entice people to undergo drenching with ice water. “I think it was perfect timing.”
But now it’s September and turning cooler, and Quinn is back to doing the exhausting rounds of fundraising events of other sorts, despite the fact that the progression of the disease has by now rendered him incapable of raising his arms over his head. Saturday wasn’t the first time that he has visited our area; he recalls playing rugby against SUNY New Paltz in his college days, and recalls fondly of the locals, “They know how to have a good time.”
The Crossfit Challenge for Quinn for the Win was one of eight ALS fundraisers organized to occur simultaneously on the morning of September 13 — “all happening now, as we speak” — at Crossfit gyms around New York State. The brainchild of New Paltz High School graduate Joe Judge, owner and operator of Crossfit 299, it involved gym patrons being challenged to expand their already-intense seven-to-12-minute Crossfit WOD, or Workout of the Day, to a full half-hour. The “suggested donation” for participants was $50, and raffle tickets were being sold as well. Counting donations coming in through shares of postings on the Highland gym’s Facebook page, over $5,000 had been raised by Saturday morning.
Judge, who plays Division One rugby for the White Plains Rugby Football Club, got to know Quinn through his teammate Charlie Rizzo, who had played the sport with Quinn on the Iona College team. On Saturday evening, White Plains Rugby’s season-opener game down in Westchester against the Mystic River Rugby Football Club would be another fundraiser for Quinn for the Win, with Quinn himself in attendance along with a big crowd of “not just rugby fans.”
Donations to Quinn for the Win are divided up with 80 percent going to the patient himself and 20 percent for the ALS Therapy Development Institute’s research toward a cure. Quinn describes his medical expenses as “astronomical…Insurance only covers so much.” And they will go higher as his condition worsens and he becomes less mobile, necessitating structural modifications to his home. “Soon I’ll need constant care,” he predicts, noting that typical life expectancy after a diagnosis of ALS is only two to five years.
“They can’t tell me how I got it,” Quinn says. “They can’t tell me what to do for it.” He gets regular physical therapy from a trainer – “mostly stretching,” he says, to enhance mobility. And he is taking a medication called Riluzole, but people on that therapy “live only three to nine months longer” than untreated ALS patients. “I was in a trial last year that had some positive results,” he says, but notes that ALS research goes underfunded because Big Pharma is reluctant to invest much in longitudinal drug trials whose participants often don’t live long enough to yield bankable results.
Quinn, who majored in criminal justice at Iona, says that he “always wanted to be a cop.” He was accepted to the State Trooper Academy right around the time of his diagnosis, but they would not let him matriculate, given the disease’s poor prognosis. He remains philosophical in the face of such great adversity, figuring that there was something else that he was meant to do in life instead of pursuing his original career goal. “Our first goal is awareness,” he says of his tireless education and fundraising campaign, which has resulted in invitations to make public appearances in places as far away as Japan, Colombia and Brazil.
Besides Frates and his supportive buddies from the rugby community, Quinn considers himself fortunate to have a “tight-knit group” of friends and family working with him on his campaign for a cure. He just got married in July, and his wife Jenn posts regularly on the Quinn for the Win Facebook page.
As he stands in the September sunshine in front of Crossfit 299 while gung-ho athletes lift and lunge inside, strangers walk up to Quinn one after another and greet him warmly. One passerby presses a wad of bills into Joe Judge’s hand, in memory of a friend’s son who had just died of ALS two days earlier. “Joe has been awesome. I owe him a lot for getting Crossfit involved,” says Quinn. “Everybody has been very welcoming. This has been a very easy morning.”
To make a contribution to Quinn for the Win, visit www.quinn4thewin.com. To follow Pat Quinn’s progress and fundraising exploits, like Quinn for the Win on Facebook.
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