Originally published 2020-11-25.
Photo: ALS Association
Pat Quinn, one of the men credited with turning the Ice Bucket Challenge into a worldwide movement, died on 22 November 2020 at the age of 37. He had lived with amyotrophic lateral sclerosis (ALS) for more than seven years. The challenge he helped spread in the summer of 2014 brought in about $115 million for the ALS Association and, by the association's count, more than $220 million for ALS research worldwide.
For anyone who remembers their social feeds filling with shrieking friends and buckets of ice, his death was a reminder that behind the viral fun stood real people facing a brutal disease. Here is who he was, how the challenge began, what the money achieved and what ALS actually is.
Who Pat Quinn was
Quinn grew up in Yonkers, New York, and kept his roots there all his life. In March 2013, about a month after he turned 30, doctors told him he had ALS. He responded by going public. With friends and family he built a support network called "Quinn for the Win", which became both his personal cheering section and a platform for raising awareness.
When the ice bucket videos began to circulate in July 2014, Quinn and his circle pushed them hard, nominating friends and urging everyone who took part to give. Alongside Pete Frates in Massachusetts, he became one of the faces of the craze. The ALS Association named him an "ALS Hero" at its leadership conference in 2015.
He did not stop when the headlines faded. Quinn held an annual Ice Bucket Challenge event in Yonkers, promoted voice banking through Project Revoice (which lets people with ALS record their own voice before they lose the ability to speak), and started a campaign called "FindUrSmile". At the challenge's fifth anniversary he summed up his goal plainly: "I will not leave this Earth until I know the next person diagnosed with ALS has a real plan."
(The Facebook post originally embedded here is no longer available; its text is kept below.)
His family announced his death on the Quinn for the Win page on the morning of 22 November 2020.
How the Ice Bucket Challenge really started
Quinn is often called a co-founder, and the ALS Association uses that term. The full story has a few more names in it. Dousing yourself with cold water for charity had been floating around as a generic stunt in mid-2014. The first documented link to ALS came on 30 June 2014, when Florida golfer Chris Kennedy took the challenge and nominated his cousin, Jeanette Senerchia, whose husband had ALS.
Quinn was a Facebook friend of the Senerchias. He picked up the idea and encouraged his own network to join in. Within roughly two weeks Pete Frates, a former college baseball captain from the Boston area who had been diagnosed in 2012, took part as well. Frates' enormous local following, combined with Quinn's New York network, pushed the challenge from a few friend groups to celebrities, politicians and athletes. Frates died of ALS in December 2019, aged 34.
The format was simple: film yourself having icy water tipped over your head, name a few people to do the same within 24 hours, and donate to ALS research. Some people did the bucket and skipped the donation, and some gave without getting wet, but the formula worked on a scale nobody expected.
How much it raised and how many took part
The numbers are striking even years later:
- More than 2.4 million tagged videos circulated online during the craze.
- Between 29 July and 21 August 2014 the ALS Association gained more than 739,000 new donors.
- By 29 August 2014 the association said it had received more than $100 million since late July. Its final 2014 total from the challenge was about $115 million.
- Counting gifts to other ALS charities around the world, the challenge raised more than $220 million.
The ALS Association reported that about 67% of the money it received, roughly $77 million, went to research. The rest went to patient and community services, public education and fundraising costs.
What the money achieved
Critics at the time asked whether pouring water on your head could do any real good. Research results gave a partial answer. In July 2016 a team led from the University of Massachusetts Medical School identified NEK1 as a gene linked to ALS, work that was funded in part by challenge donations. The global gene-sequencing effort Project MinE received $1 million. Money also went to drug development programmes, clinical trial networks and care services for families.
No single cure came out of 2014, and it would be misleading to suggest one did. What changed was speed and scale: a disease that had long struggled for attention suddenly had funding to sequence thousands of genomes and test more ideas at once. Since then, treatment options have widened a little. Riluzole and edaravone are approved to slow progression, and in April 2023 the US Food and Drug Administration approved tofersen for people whose ALS is caused by mutations in the SOD1 gene.
ALS in plain terms
ALS attacks motor neurons, the nerve cells in the brain and spinal cord that carry signals to the muscles. As those cells die, muscles weaken and waste away. People gradually lose the ability to walk, use their hands, speak, swallow and eventually breathe. Thinking and memory are often unaffected, which many patients describe as one of the hardest parts.
A few key facts:
- How common is it? Roughly 1.6 to 1.9 new cases per 100,000 people each year, which fits the older rule of thumb of about one in 50,000.
- Outlook: Most people live two to four years after diagnosis. About half die within 30 months of their first symptoms, while around one in ten lives for ten years or more.
- Causes: In 90 to 95% of cases there is no known cause. Around 5 to 10% are inherited; the most common genetic culprit is a change in the C9orf72 gene, followed by SOD1.
- Names: In the UK and elsewhere it is usually called motor neurone disease (MND). In North America it is widely known as Lou Gehrig's disease, after the New York Yankees star who was diagnosed in 1939 and died in 1941.
The most famous exception to the usual timeline was the physicist Stephen Hawking, diagnosed at 21 in 1963. He lived another 55 years, dying in 2018, an extraordinarily rare course that doctors still cannot fully explain.
If you notice persistent muscle weakness, twitching, slurred speech or trouble swallowing, talk to a doctor. Most such symptoms have other causes, but a specialist assessment is the only way to know.
The criticisms, and what they taught charities
The challenge was not universally loved. Commentators called it "slacktivism", since many people filmed the stunt and never donated; surveys in the UK suggested only about one in ten participants gave money. During California's drought, the estimated millions of gallons of water used drew complaints. The philosopher William MacAskill argued that some of the money would simply have been diverted from other causes. Others objected to specific kinds of research the association funded.
Even so, fundraisers still study 2014 as the model of a peer-to-peer campaign: a clear action, a personal nomination, a deadline and a cause with real faces attached. Quinn and Frates were those faces, and their openness about living with ALS gave the silliness a purpose.
A legacy that outlived the trend
The ALS Association described Quinn as someone who seized every chance to raise awareness, and said he fought the disease with positivity and bravery. Seven years after his diagnosis he was still organising, filming and talking to newly diagnosed families. The buckets have mostly gone back in the garage, but the genes found, the trials funded and the voices banked are part of what he left behind.
Sources: ALS Association: Remembering Pat Quinn, ALS hero and co-founder of the Ice Bucket Challenge; Wikipedia: Ice Bucket Challenge; Wikipedia: Amyotrophic lateral sclerosis; Quinn for the Win (Facebook).
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