Pat Quinn – one of the co-founders of the social media ALS ice bucket challenge, which has raised more than USD 200 million worldwide for Lou Gehrig’s disease research – died on Sunday at the age of 37, according to the ALS Association.
Quinn was diagnosed with Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis, in 2013, a month after his 30th birthday, the organisation said in a statement announcing his death.
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“Pat fought ALS with positivity and bravery and inspired all around him,” the association said.
“Those of us who knew him are devastated but grateful for all he did to advance the fight against ALS. 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.”
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In 2014, Quinn saw the ice bucket challenge on the social media feed of professional golfer Chris Kennedy. Kennedy dared his wife’s cousin Jeanette Senerchia, to take a bucket of ice water, dump it over her head, post a video on social media and ask others to do the same or make a donation to charity; Senerchia’s husband had ALS.
Quinn and co-founder Pete Frates, along with their teams of supporters, helped popularise the challenge.
The ALS Association said Quinn “knew it was the key to raising ALS awareness,” calling it “the greatest social media campaign in history.”
Frates, a former Boston College baseball player, died in December 2019 at the age of 34. When the two picked it up, the phenomenon exploded, the organisation said.
Thousands of people participated in the viral trend, including celebrities, sports stars and politicians — even Donald Trump before his election, and cartoon character Homer Simpson. Online videos were viewed millions of times.
“It 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,” the organisation’s statement said.
Lou Gehrig’s disease, named after the New York Yankees great who suffered from it — is also known as ALS or motor neuron disease. It is a progressive neurodegenerative disease that leads to paralysis due to the death of motor neurons in the spinal cord and brain. There is no known cure for it.
The organisation added that Quinn continued to raise awareness and funds after popularising the challenge. In 2015, the association honoured him, among others, as ‘ALS Heroes’ — an award given to people living with the disease who have had a significant positive impact on the fight against it.
On the fifth anniversary of the challenge, Quinn, who was from Yonkers, New York, addressed a crowd in Boston.
“Nobody knew the Ice Bucket Challenge would become a worldwide phenomenon, but we united as one because that is what it takes to change a disease like ALS,” he said.
“There are warriors all over the world unwilling to accept it as a death sentence. We will never stop fighting together. I will not leave this Earth until I know the next person diagnosed with ALS has a real plan to live with this disease, not just die from it.”
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