Pat Quinn co-founded the greatest viral phenomenon ever — the Ice Bucket Challenge
I love WWII movies. I am embarrassed to admit the number of times I’ve seen Saving Private Ryan, or that my brother and I have a Christmas tradition of binge watching Band of Brothers mini series. The brotherhood that happens during wartime is truly colorblind and typically life-long, from what I imagine. I’m not a veteran, but the loss of life against a common enemy is far too familiar to me.
I was diagnosed with ALS in 2012 and instantly joined or perhaps drafted, is a better term, into the battle of my life. There is no known cause or cure for ALS. It has a life expectancy rate of 2–5 years. It is relentless. It takes away its victim’s ability to walk, talk, and ultimately breath. It does this slowly but methodically, all while leaving the brain completely untouched.
I am an outlier within the ALS community. Not because of some medical miracle, but because I decided to get a tracheotomy and rely on a machine that is no bigger than a car battery to breathe for me. Forever. Sadly, only 10% of ALS patients in the US decide to prolong their lives by getting a trach. I always knew that I wanted one, but it took respiratory failure and three days in the ICU to finally convince me that it was time.
I learned Thursday afternoon that a brother-in-arms, Pat Quinn had died. The discovery of his passing happened like so many before it. On Facebook. It started with a post that didn’t directly say that he had died, but it was enough to send chills down my spine and my eyes to his profile.
I scrolled and there it was. An announcement from his family. Fuck was the only word that came to mind. Over and over. First it was Pete Frates dying earlier this year. Quinn and Frates names will be forever linked in history as the founders of the Ice Bucket Challenge in 2014. That summer, the greatest viral giving period, with over $220 million raised worldwide.
I have lost count of the number of people that I have been friends with that have died from ALS over the past eight years. I have been a proud public figure in the ALS community since I was diagnosed and founded A Life Story Foundation. I get friend requests every day from people with ALS and their family members. I don’t usually become close friends with everyone for a myriad of reasons.
It was different with Quinn. We met in person years ago at a fundraiser in NYC that we hosted at a restaurant where I used to work. It was an epic culinary experience! Six well known chefs, each preparing a single course. Quinn and I were still early in the disease progression and similar in age. It was all we needed to start a true friendship.
We were both avid sports fans. I don’t think we would have been really friends if we didn’t have the same disease. However, Quinn was the type of guy that you could meet at a bar and feel like you’ve known him for years. He had this approachable nature that was infectious. We never spoke regularly. I deeply regret that right now.
The last time I talked to Quinn, it was via text message, which was new for us. We usually just spoke on Facebook messenger. I told him that we could probably exchange numbers. It had been over six years already. I am not surprised by the next message I received from Quinn.
“Dude, I’m doing a mustache fundraiser for ALS TDI. You in? “
The answer was easy.
“Yeah, of course. What do I need to do?”
“Grow a handlebar mustache and get people to donate.”
Um. What? How? That was it. That’s all he said. I had so many reasons why this would never work. However, before the Ice Bucket Challenge even started to hint that it might be something, I had the same exact thought. That stuff didn’t bother Quinn. It didn’t need to be backed by analytics or a proven marketing plan. It was going to raise some money and awareness for the fucking disease that killed him.
I grew a mustache and shot a video of my wife shaving the final details. I posted it. I tweeted it. I tagged it. I looked like an asshole and a civil war soldier all at the same time. While I will admit it was never something I understood. I did it anyway. I raised Raised $100. From my mom.
Quinn and his band of brothers raised almost $50,000!
I am convinced that Quinn and only Quinn could have such success. He had such a loyal following of friends and family outside of NYC. The amount of loss that I feel is nothing compared to the void his closest inner circle must feel.
Like soldiers at war, Quinn and I shared the same brutal enemy. It surrounds our lives, finding its way into every moment. But like those soldiers, we both had lives before the war. It is difficult to remember that, but I am certain that we did. Quinn doesn’t get to know a life after war. I don’t know if I will either. But I do know that I will continue to fight like hell every fucking day!
Pat Quinn, you are a beautiful human being, and you will never be forgotten.