To us, it is known as the ice bucket challenge. But to Howard Beach resident Patt Quinn, it is an effort to use a limited time window to raise awareness about ALS.
A nomination. Ice water. A bucket. Pat Quinn.
In 2012, 29-year-old former Boston College Eagles baseball team captain Pete Frates was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease. Just a year later, Howard Beach resident Pat Quinn was also diagnosed.
After his diagnosis, he sought support from Frates. What has arisen from the union of the two men, their disease and their cause, is a social media sensation sweeping the nation.
The challenge has been used before —but Quinn’s idea to introduce it to the ALS fundraising arena has resulted in staggering increases to ALS-related causes and research.
For the same time period in 2013, late July through early August, donations were recorded around $25,000. For the same time period this year, the figure has gone wailing past $2 million.
The videos first birthed in the Boston College and New York communities are drawing “viral” audiences across the nation.
The 31-year-old said he did not know much about ALS when he learned of his diagnosis in March 2013, which led him to read up his dismal prognosis.
The odds were against him, but with the support of family, friends and his incredibly strong wife, Jenn, Quinn said he decided early on that he would do all he could to battle this disease. He said he decided putting the Ice Bucket Challenge to good use was a start. The rest is Facebook history.
“In the beginning, I had to force all of my friends to do it. My goal was just to get the word out – to raise ALS awareness and money,” said Quinn. “I wanted to make a change.”
To say he has achieved his goal is an understatement. The movement has since turned into the same kinds of videos recorded over and over of people getting drenched in freezing cold water showing up on Facebook newsfeeds across the globe.
With close ties to Rockaway residents through Iona College, the challenge began to flood the pages of Rockaway, Breezy and Broad Channel Facebookers first. From there, it has gone up and down the east coast, across the country, and internationally.
“From celebrities to athletes, it’s mind-blowing how big this has gotten,” Quinn said. “I got a message from a woman in Canada with an article from a French newspaper. The only thing I understood on the whole page was my name!”
Quinn tried to put a number on the amount of people who have taken the challenge, but said it has been impossible to keep track.
For Quinn, life has not been easy. Every day gets tougher. He said he hopes the disease progresses slower than expected as his arms and legs have gotten weaker.
“Nothing has changed in ALS research since Lou Gehrig’s farewell speech 75 years ago,” Quinn said. “There is only one drug that has been found to help patients with ALS.”
The drug he was referring to is known as Rilutek, which is not a cure, and is said to increase life expectancy for only three to nine months. ALS has no cure and life expectancy is two to five years, according to statistics.
So why haven’t things changed?
Unlike cancer, the number of people who get ALS each year is in the thousands instead of the millions. And since life expectancy is so short, medical professionals do not have much time to make an impact in the fight for a cure, Quinn said.
“You can’t compare two diseases,” said Quinn. “But when the population who get a disease is small and life expectancy is so short, we have less of a voice.”
The silver lining, Quinn said, was the challenge’s popularity helping to draw much more attention to the condition. But while Facebook has been blowing up, some have criticized the campaign’s effectiveness, questioning peoples’ intentions and debating whether or not pouring water over one’s head is helping the cause.
Quinn was quick to rebut.
“Without a doubt the challenge has brought a new sense of awareness. It doesn’t matter why people are doing it. People were not talking about ALS before and now they are,” he said. “That’s the first step. Next comes the money, which means more research.”
As for the affect the Internet phenomenon has had on ALS patients, Quinn said the ALS community has always been closely knit and this made it even stronger.
“So many people have reached out to me, thanking me and sharing stories of how this has inspired them and given them a sense of hope,” he said.
And the numbers have not lied. Bill Toet, Chairman of the ALS Association said his group has received $2.3 million in donations from July 29 to August 12, compared to $25,000 over the same period last year.
For Quinn, the success of the Ice Bucket Challenge has been so much more than he ever expected and has given him the drive to stay focused on the fight.
“Sometimes, it is easy to question why certain things happen to you, but I believe this hand has been dealt to me for a reason and I’m not giving up,” he said.
By Jamie Pisani