Patrick Quinn, co-creator of the Ice-Bucket Challenge, has died after a 7-year battle with ALS, also known as Lou Gehrig’s disease.
The ALS Association announced the news on Sunday, writing, “We are deeply sorry to share that Pat Quinn passed away today. Pat was co-founder of the ALS Ice Bucket Challenge and an inspiration to millions of people around the world.”
The organization reported that Quinn was diagnosed in 2013, just one month after celebrating his 30th birthday. Shortly after his diagnosis, he established a cause called “Quinn for the Win” to raise awareness in the fight against the disease.
The organization’s website reads, “We believe collaboration and working together is key to beating this disease! Let’s fight together! Quinn for the Win is here to make a difference and do everything we can to end ALS!”
When he came across the Ice Bucket Challenge on social media in 2014, Quinn, along with members of “Quinn for the Win”, teamed with Pete Frates to turn the social media event into a way to raise awareness and money for ALS research.
According to Reuters, Quinn’s efforts helped raise more than $220 million for medical research.
Here’s what you need to know:
Patrick Quinn’s Accolades
Over the course of his life, Quinn received a number of accolades for his advocacy work, including the ALS Association Living Hero Award, the ALS Therapy Development Institute Stephen Hayward Patients Today Award, and the City of Yonkers Mayor Mike Spano Distinguished Service Award, according to Answer ALS.
Quinn hosted an Ice Bucket Challenge in his home of Yonkers each year. When he took home the Webby Award for the ALS Ice Bucket Challenge, his five-word acceptance speech included just five words: “Every August Until A Cure.”
A post on the ALS Association Facebook Page reads, “Pat continued to raise awareness and funds for the fight against ALS and our thoughts are with the Quinn family and all of his friends and supporters. Pat was loved by many of us within the ALS community and around the world. He will be missed, but he will continue to inspire us until we have a world without ALS.”
In 2019, Quinn appeared in a public service announcement along with NFL legend Terry Bradshaw. The video, according to the ALS Association, has aired more than 63,000 times nationwide.
How Many People Have ALS?
The CDC reports that approximately 12,000-15,000 in the United States have ALS. It specifies, “ALS is slightly more common in men than women. ALS is age-related; most people find out they have it when they are between 55 and 75 years of age, and live from 2 to 5 years after symptoms develop. How long a person lives with ALS seems to be related to age; people who are younger when the illness starts live slightly longer.”
In July 2016, The New York Times reported that money raised from the ALS challenge helped fund research and development that led to the discovery of NEKI, which scientists “say is among the most common genes that contribute to the disease and is associated with 3 percent of A.L.S. cases.”
The outlet added, “The discovery of NEK1 is significant but is not a breakthrough — some 30 genes tied to the disease have already been identified — according to Brian Frederick, executive vice president for communications and development for the A.L.S. Association.”
It’s unclear what exactly causes ALS. Over the past few years, scientists have devoted a great deal of their research into determining what factors could be linked to the disease, such as genes and environmental exposures, according to the CDC.
It is reported that about 5-10% of ALS cases occur within families.
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