Every August until a cure.
It has been two-and-a-half years since Pat Quinn delivered those words in an acceptance speech for special achievement at the Webby Awards. The phrase became a rallying cry for people living with ALS and their families.
Quinn, now 34, was there in recognition of his efforts in co-founding the Ice Bucket Challenge, considered among the most successful online fundraising campaigns of all time.
This past August marked the three-year anniversary of the Ice Bucket Challenge, which Quinn co-founded with Pete Frates, who was diagnosed with ALS at age 27 in 2012. A year later, Quinn, then 30 also received a diagnosis of this incurable motor-neuron disease, formally known as amyotrophic lateral sclerosis but better known as Lou Gehrig’s Disease for the legendary New York Yankee who died of it in 1941 at age 37.
During a November interview in Quinn’s Yonkers apartment overlooking the Hudson River, he repeats those five words about a cure when asked about the future of the Ice Bucket Challenge, in which participants douse themselves (or are doused) with a bucket of ice water to promote awareness of the disease and financial support for a cure in the form of charitable fines for not accepting the challenge within 24 hours.
“While it will never again be what it was that first summer, it’s important to keep it going so people know that it’s not over,” he said. “Until people can live with ALS, and are not just dying from it, we won’t stop.”
While Quinn can still communicate using his own voice, and does so while speaking with WAG, he requires a quiet setting to be heard. Soon he said he will rely more on a speech-generating device, which allows him to type out words with his eyes.
ALS, which attacks the nerve cells in the brain and spinal cord, has no known cure and only one FDA-approved drug that can modestly extend survival. The disease causes people to lose the ability to control muscle movement, leading to paralysis and death typically within two to five years of diagnosis. About 6,000 people are diagnosed every year.
The disease has taken much of the strength from Quinn’s legs and arms, leaving him unable to walk and with only slight movement in his fingers and shoulders.
But Quinn says he’s as determined as ever to push for ALS awareness and a cure.
He grew up in Yonkers, attending Iona Prep for high school and then Iona College, where he played rugby. After his diagnosis at age 30, Quinn said he spent about a week adjusting to the new reality before resolving he would “get involved and make a difference.”
“I knew I was young and my progression wasn’t too fast, so I knew I had time to create awareness.”
Quinn said his own awareness of ALS was limited before he was diagnosed.
“I knew a little,” Quinn said. “I knew Lou Gehrig. I knew it was not good. But I had no idea how devastating it can be.”
He spent the first year after his diagnosis putting himself out there, telling his story and connecting with people also living with ALS. He entered a team of 200 friends and family into the Westchester Walk to Defeat ALS at Manhattanville College that year.
“After the walk, I knew we had something special,” Quinn said.
But did he ever expect to launch a worldwide movement? Quinn smiles when asked about that first summer in 2014 with the Ice Bucket Challenge.
“When we saw the Ice Bucket, we saw an opportunity to create awareness, but then it took on a life of its own” he said.
The Ice Bucket Challenge had been around about a year before it came to Quinn’s attention. It had been mostly used to raise awareness for a mix of causes.
The rules were simple and perfectly designed to expand rapidly in the social media age. People made videos of themselves dumping a bucket of ice water on their heads, posted it to Facebook and challenged friends to do the same within 24 hours, or donate $100 to ALS. Plenty of people did both.
Working with Frates, a former captain of the Boston College baseball team, Quinn helped turn the challenge into a sensation. The videos spread rapidly among Quinn’s friends and family in Yonkers and New York City and then among those of Frates in Boston before becoming a viral phenomenon. By the end of the summer, everyone from LeBron James to Bill Gates to Justin Timberlake to George W. Bush had doused himself in icy water for the cause.
“What happened was amazing,” Quinn says. “It was a miracle.”
The challenge not only spread awareness, it raised money for ALS research in volumes previously unthinkable.
More than 17 million people filmed a video of themselves taking the challenge and more than $115 million was raised in six weeks for the ALS Association.
“The Ice Bucket Challenge has definitely changed the fight against ALS forever,” said Brian Frederick, executive vice president of communications and development for the ALS Association.
Frederick said there was typically only limited awareness about ALS among people who didn’t have a direct connection to the disease. On top of the millions raised in the Ice Bucket Challenge’s first weeks, Frederick said the association’s annual fundraising has doubled from its pre-Ice Bucket numbers.
“After the Ice Bucket Challenge, there was a much more widespread awareness about ALS and more people who considered it something that we should be invested in and fighting,” Frederick added.
Quinn said the money raised has led to more research now than ever for ALS. In May, the FDA approved Radicava, the first drug approved to treat ALS in 22 years. The drug demonstrated in clinical trials that it can slow the progression of the disease.
In 2016, the ALS Association credited donations from the Ice Bucket Challenge for funding research that discovered a new ALS gene, NEK1, which ranks among the most common genes that contribute to the disease.
“So there are things happening,” Quinn said about the progress toward a cure. “Are we there yet? No. But we are on the way.”
Quinn’s work continues. Along with the Ice Bucket challenge every August, his Twitter and Facebook feeds stay updated with news of him attending and helping out fundraising events for ALS.
He is working with the GoBoldly campaign run by the Pharmaceutical Research and Manufacturers of America trade group, which highlights patients and researchers working to cure diseases.
Including his own charity, Quinn for the Win, which is run with family and friends, Quinn estimates his team has been involved in raising more than $220 million for ALS.
“We are always up to something,” Quinn said, noting that the charity posts events on its webpage throughout the year.
In Westchester, the Empire City Casino and the city of Yonkers host an annual August ice bucket challenge event, while Maggie Spillane’s in Mount Vernon hosts an annual Quinntoberfest ALS benefit every October.
“I’m very lucky to have the family and friends I do,” Quinn said, adding that the city of Yonkers rallied behind him.
Quinn said its important people understand “the fight is strong and that the disease is not easy, so we must continue to fight together. Because without everyone’s support, it is impossible.”
For more, visit q4tw.com.