Man with ALS who inspired ice bucket challenge is still alive, despite reports

Peter Frates posted a video of himself in a hospital bed while Pearl Jam’s Alive played in the background after multiple newspapers announced he had died

The man who helped raise over $100m to combat the neurodegenerative disease ALS by encouraging millions of people to pour icy buckets of water over their heads is still alive, despite reports to the contrary, and has posted a video to Twitter to prove it.

Peter Frates, 32, posted a 45-second video of himself in a hospital bed while Pearl Jam’s Alive played in the background on social media on Monday, writing: “In the words of my friend ed,” presumably a reference to Pearl Jam singer Eddie Vedder.

in the words of my friend

— Pete Frates (@PeteFrates3) July 3, 2017

Frates was diagnosed with amyotrophic lateral sclerosis, also known ALS or Lou Gehrig’s disease and referred to in Britain as motor neurone disease, in 2012. There is currently no cure for the disease, and the ALS ice bucket challenge sought to raise money to fund research into a cure.

Celebrities including Anna Wintour, Tom Cruise and Shakira participated in the challenge after it went viral in 2014. It raised more than $115m for ALS research.

Frates’s family said in a Facebook post on Sunday that he had returned to the hospital for treatment of the disease.

The next day, multiple newspapers announced Frates had died.

Two women participate in the ice bucket challenge at Boston’s Copley Square on 7 August 2014.
Two women participate in the ice bucket challenge at Boston’s Copley Square on 7 August 2014. Photograph: Elise Amendola/AP

The false reports emerged after veteran Boston Globe columnist Mike Barnicle tweeted that a family friend had told him Frates was dead. Barnicle later deleted the tweet and posted a correction. “Family friend of Peter Frates told me had passed at 32,” Barnicle said. “He was wrong and I was doubly wrong to tweet it. Thank God I was wrong.”

He also encouraged people to donate to the ice bucket challenge instead of using their time for the “deserved hammering” they were giving him.

Hours after the false stories were published, Frates’ family said he was “resting comfortably”.

The ice bucket challenge continues each year in August, though it is not as popular as it was in 2014.

Amid that period of viral success, a backlash saw some participants criticized for simply following a trend without fully understanding the cause they were supposed to be supporting.

But the staggering number of donations had a positive result.

Funds raised through the challenge were directed towards a number of research projects, including Project MinE, which last year discovered a new gene associated with the disease because of funds raised through the challenge.


Amanda Holpuch in New York

The GuardianTramp

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