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An American man who helped found the Ice Bucket Challenge “put motor neuron disease on the map,” the Irish association for the disease said after his death.
The Ice Bucket Challenge was a social media campaign in which people around the world posted videos and photos of themselves throwing buckets of ice water at their heads and challenging others to do the same while urging donations for research on motor neuron diseases.
The challenge went viral in 2014, generating more than € 186 million worldwide for amyotrophic lateral sclerosis (ALS) medical research. In Ireland, about € 1.7 million was raised through the campaign.
Patrick Quinn, co-founder of the challenge, died this weekend at age 37. In New York State, she was diagnosed with ALS, also known as Lou Gehrig’s disease, in 2013.
“It is with great sadness that we have to share Patrick’s passing early this morning,” his team wrote in a post on Quinn’s ALS advocacy Facebook group. “We will always remember him for his inspiration and courage in his tireless fight against ALS.”
Maeve Leahy of the Irish Association for Motor Neuron Diseases said the challenge, started by Peter Frates and later taken up by Mr Quinn, had funded advances in disease research.
“We will always be grateful for their courage and inspiration as they changed the course of the history of this disease,” Leahy said.
“Thanks to them, this underfunded disease had its day in the limelight and we are still seeing the fruits of their labor. I think it’s the most successful viral challenge ever. “
With the funds generated in Ireland, the association financed an additional nurse to help people with the disease, bought equipment, while € 600,000 also went to research on the disease.
“Thanks to funds raised across Europe, they were able to identify a new gene. It was called NEK1. The money raised actually went to fund a breakthrough. “
Around 110 people are diagnosed in Ireland with motor neuron disease each year. The condition known as 1000-day illness, a reference to the average time between diagnosis and death.
Half a million people across Ireland took part in the challenge to raise money for the association, including several high-profile individuals like Dáithí Ó’Sé at the Rose of Tralee.
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