The ALS Ice Bucket Challenge was an unprecedented worldwide viral smash when it launched last summer, raising more than $220 million for research into the incurable ALS, also known as Lou Gehrig’s Disease.
The fresh funding, it turns out, has greatly advanced the quest to find a cure for ALS, a development that’s music to the ears of Ice Bucket Challenge co-founder and driving force Pat Quinn of Yonkers.
Researchers at Johns Hopkins in Maryland were able to accelerate their work on a particular protein found in patients with ALS, leading to a greater understanding of how the disease could possibly be treated.
“I think the announcement from Johns Hopkins was huge,” Quinn told IrishCentral's sister publication, the Irish Voice. “It was good to hear it, and to know that the Ice Bucket Challenge helped to speed things up is amazing.”
Quinn, 32, was diagnosed with ALS in 2013 after experiencing symptoms for several months. He found a friend in Pete Frates, a fellow ALS patient and standout college athlete who had a network of contacts in Boston. Together, they came up with the concept of people recording themselves being drenched in ice water to raise money for ALS research.
"Without it, we wouldn't have been able to come out with the studies as quickly as we did," Philip Wong, a professor at Johns Hopkins who led the research team, said last month.
"The funding from the ice bucket is just a component of the whole – in part, it facilitated our effort. The money came at a critical time when we needed it."
The Ice Bucket Challenge resulted in donations, large and small, from millions of people who helped the movement go viral. Quinn is especially pleased that those who donated can take heart from the accelerated research thanks to their generosity.
“What’s also great is that people know what ALS is now. Before, some people hadn’t even heard of it. The awareness factor is so important. More awareness, more knowledge, more effort to find a cure.”
Driving the race to a cure is exhilarating but physically draining for Quinn, who says the disease is “progressing relatively slow” in his body. Some days, though, are tougher than others.
“My arms are very weak and my legs are getting shaky, and I’ve lost some weight recently,” said Quinn, who attends physical therapy and acupuncture sessions regularly “to keep my body as loose as possible.”
Standing right by Quinn’s side is his wife and “inspiration” Jenn, who he married in July of last year.
“I’d be lost without her,” said Quinn. “Everything I do, she’s right there with me.”
As autumn approaches, Quinn is continuing with his ALS fundraising awareness through his Quinn for the Win initiative which he started last year.
The next event on the calendar is Saturday, October 3 when the Yonkers police and fire departments square off in a charity football game at Saunders High School at 2 p.m. All proceeds will be donated to Quinn for the Win.
The following day, October 4, a party will be held at Maggie Spillane’s in Mount Vernon. A host of Irish bands will appear, including Jameson’s Revenge and Shilelagh Law.
For more information, visit the Quinn for the Win page on Facebook.