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.
“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.”
Quinn, and co-founder of the challenge Pete Frates, along with their teams of supporters, helped popularize the Ice Bucket Challenge on social media in summer 2014 as a way to raise ALS awareness. The challenge involved people posting videos of themselves having icewater dumped on their heads, then naming someone else to do the same over social media.
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. Thousands of people participated in the viral trend, including celebrities, sports stars and politicians — even Donald Trump before his election – helping to raise an estimated $200 million.
“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 organization said.
Lou Gehrig’s disease, named after the New York Yankees great who had 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.
In 2015, the association honored Quinn, 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, N.Y., 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.”