ALS Ice Bucket Challenge co-creator dies 7 years after diagnosis

ALS Ice Bucket Challenge
Chicago Cubs vice president of baseball operations Theo Epstein is dunked with a bucket of water as part of the ice bucket challenge in awareness for ALS research after the game between the Cubs and Milwaukee Brewers at Wrigley Field, Chicago, Illinois, Aug. 14, 2014. |

The co-creator of the Ice Bucket Challenge that raised awareness about ALS has died, seven years after his diagnosis.

Patrick Quinn, 37, died Sunday after a seven-year battle with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. Together with Peter Frates and Anthony Senerchia, two other men who also succumbed to the disease, Quinn co-created the 2014 challenge where social media users worldwide poured a bucket of ice water over their friend's head or their own.

This challenge, which was meant to mimic what ALS patients experience, spread rapidly worldwide. Its purpose was to raise funds for research into the neurodegenerative neuromuscular disease that is underfunded. The disease rapidly destroys nerve cells that control muscles and motor function. Those with the disease gradually lose their ability to move their limbs, eat, speak, and breathe without assistance.

Challenge participants, which included celebrities, pastors, and former President George W. Bush, nominated their friends to participate and then donated to ALS research. ALS is among the rare diseases that receive little research funding because only around 5,000 people in the United States are diagnosed with it each year. To date, no known cure exists and the cause of the disease is not known.

ALS is referred to as Lou Gehrig's disease in the U.S. after the famous New York Yankees baseball player who died in 1941, three years after his diagnosis. 

The ALS Association said in a statement on its website that the Ice Bucket Challenge that Quinn helped create "dramatically accelerated the fight against ALS, leading to new research discoveries, expanded care for people living with ALS, and significant investment from the government in ALS research."

"Quinn, who was from Yonkers, New York, and went by Pat, was diagnosed with the illness a month after his 30th birthday in 2013. He had posted a photo of himself from hospital to Twitter on Nov. 20, two days before his death, with hopes that he would be able to go home soon after being admitted with trouble breathing," NBC News reported.

According to the Centers for Disease Control, approximately 20,000 people in the U.S. currently have ALS. The disease usually occurs in people between the ages of 40 and 70. The ALS Association says that life expectancy is three years after diagnosis.  

"The Ice Bucket Challenge connected with a sweet left hook to the jaw of ALS and shook the disease up," Quinn told a crowd in Boston in 2019, five years after the social media campaign was launched.

"But by no means is this fight over. We need to knock this disease out."

When the challenge was first launched in 2014, some Christian and pro-life leaders urged scrutiny of the campaign because the organization participants were urged to donate to was supportive of using embryonic stem cells in research.

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