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Pete Frates, Who Helped Raise Millions For ALS Research, Dies At 34


If you were on the Internet at all in 2014, this scene will sound familiar - someone pours a bucket of ice water all over themselves, then they challenge others to do the same. And many people did, including Taylor Swift.




SHAPIRO: The Ice Bucket Challenge raised a lot of money and awareness for ALS, also known as Lou Gehrig's disease. It's a neurodegenerative illness that has no cure. At the root of the campaign was Peter Frates, a former Boston College baseball player who was diagnosed with ALS when he was 27. He died today at the age of 34. NPR's Andrew Limbong has this remembrance.

ANDREW LIMBONG, BYLINE: After that initial diagnosis, the Frates family sat down for dinner. In a TED Talk, Pete's mom Nancy Frates described her son's attitude. Pete Frates played sports his entire life; he knew how to give a pep talk.


NANCY FRATES: He said, there will be no wallowing, people. He goes, we're not looking back. We're looking forward. What an amazing opportunity we have to change the world. I'm going to change the face of this unacceptable situation of ALS, and I'm going to get it in front of philanthropists like Bill Gates. And that was it. We were given our directive.

LIMBONG: And the Frateses did it. What started with their friends and families soon spread online to major league sports teams, like the Boston Red Sox.


UNIDENTIFIED PERSON: It is especially important to us, given our close friendship with Pete Frates, the man who is battling ALS right now...

LIMBONG: To celebrities on TV.


JIMMY FALLON: I'm Jimmy Fallon. I'm here with Rob Riggle, Horatio Sanz, Steve Higgins and The Roots. We've all been nominated to do the Ice Bucket Challenge, and I'd like to nominate the New York Jets to do this. You have 24 hours.


FALLON: Everyone ready? One, two, three.


LIMBONG: It even reached that original benchmark for success - Bill Gates.


BILL GATES: I'm here to join the people bringing attention to Lou Gehrig's disease by taking the ALS Ice Bucket Challenge.

LIMBONG: Pete Frates didn't invent the act of dumping cold water on your head for a charity, but he was the reason it spread so rapidly. And these videos, they weren't just for show. Brian Frederick is an executive vice president at the ALS Association in Washington, D.C.

BRIAN FREDERICK: Prior to the Ice Bucket Challenge, the only folks that really donated to ALS were folks who had a direct connection to the disease - they had a friend; they had a loved one.

LIMBONG: Frederick says that ALS organizations around the world got Ice Bucket Challenge money. His association alone raised $115 million, and that's money that led to important discoveries.

FREDERICK: Including some genes that are now associated with ALS, including one of the most common genes, NAC1, is now associated with ALS. And that was thanks to the work of researchers around the globe, fueled by Ice Bucket donations.

LIMBONG: Towards the end of his life, Pete Frates couldn't walk or breathe on his own. He depended on his family to take care of him. And that was important for the world to see, too. Pete Frates said that raising awareness was his calling, and Frederick says he succeeded. Besides the money and the research and the celebrity endorsements, Peter Frates got the word out about the symptoms and challenges of ALS and made those who were also living with the disease feel less alone.

Andrew Limbong, NPR News.

(SOUNDBITE OF HANIA RANI'S "GLASS") Transcript provided by NPR, Copyright NPR.

Andrew Limbong is a reporter for NPR's Arts Desk, where he does pieces on anything remotely related to arts or culture, from streamers looking for mental health on Twitch to Britney Spears' fight over her conservatorship. He's also covered the near collapse of the live music industry during the coronavirus pandemic. He's the host of NPR's Book of the Day podcast and a frequent host on Life Kit.