The co-founder of the viral “ice bucket challenge”, which has raised more than 200 million dollars (£150 million) worldwide for research into motor neurone disease, has died at the age of 37.
Pat Quinn was diagnosed with motor neurone disease – known as Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS) in the US – in 2013, a month after his 30th birthday.
In 2014, Mr Quinn saw the ice bucket challenge on the social media feed of professional golfer Chris Kennedy, who first 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 to make a donation to charity.
Ms Senerchia’s husband had the disease.
(1/4) We are deeply saddened to share that Pat Quinn, co-founder of the ALS Ice Bucket Challenge passed away at the age of 37. Pat was diagnosed with ALS in 2013 and went on to help popularize the greatest social media campaign in history. pic.twitter.com/c5PiZHRZbE
Advertisement— The ALS Association (@alsassociation) November 22, 2020
Mr Quinn and co-founder Pete Frates, along with their teams of supporters, helped popularise the challenge.
The ALS Association said Mr Quinn “knew it was the key to raising ALS awareness”, calling it “the greatest social media campaign in history”.
Mr Frates, a former Boston College baseball player, died in December 2019 at the age of 34.
When the two men picked up the challenge, 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 of the challenge were viewed millions of times.
The ALS Disability Insurance Access Act would waive the 5-month #SSDI waiting period, and has support from majorities in the House and Senate. Tell congressional leaders to schedule a vote to pass the bill and help people living with #ALS: https://t.co/w0pFe4y34Q pic.twitter.com/jtPzcnH8XH
— The ALS Association (@alsassociation) November 19, 2020
The ALS association said: “Pat fought ALS with positivity and bravery and inspired all around him.
“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.
“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.
Motor neurone disease is a progressive neurodegenerative disease that leads to paralysis due to the death of motor neurones in the spinal cord and brain. There is no known cure.
In the US it was named Lou Gehrig’s disease, after the New York Yankees baseball great who also suffered from it.
The organisation added that Mr 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, Mr 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.”
