A year ago, you couldn’t open Facebook without being bombarded by videos of people pouring buckets of ice water over their heads.
That Ice Bucket Challenge – to raise money for research into ALS, also called Lou Gehrig’s disease – produced 17 million videos, viewed more than 10 billion times on Facebook, and raised $115 million for the national ALS Association.
Now it’s time for Round 2.
On July 31, team members of the Boston Red Sox lifted more buckets of ice water to launch Ice Bucket Challenge 2.0.
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Watching from his wheelchair in Fenway Park was the effort’s co-founder Pete Frates, a former center fielder and captain of the Boston College baseball team who was diagnosed with ALS in 2012. He was only 27.
Later this month, his mother, Nancy Frates (pronounced fray-teez), will be the keynote speaker at an invitation-only fundraiser for Charlotte’s Joe Martin ALS Foundation, named for the late bank executive who lived 12 years after his ALS diagnosis in 1994. The organization raised about $48,000 last year from the Ice Bucket Challenge.
The disease had been in the shadows too long.
Nancy Frates, mother of Pete Frates, co-founder of Ice Bucket Challenge
Since her son’s diagnosis, Nancy Frates has been named to the board of the national ALS Foundation and begun speaking around the world, telling his story and explaining the need for more money and research.
Videos of ice-water drenchings, to raise money for various causes, had appeared on the Internet months before the Ice Bucket Challenge took off last year, she said. “We have never claimed that we were the first ones to do it. … But we claim to be the champions of it. … It exploded out of Boston.”
The story goes back to August 2011 when Pete Frates was playing in an Inter-City League game in Boston and a fastball struck his wrist. The injury didn’t heal over time, and the doctors ruled out a sprain, nerve damage and Lyme disease. Finally, in March 2012, a neurologist diagnosed ALS.
Nancy Frates was shocked and knew little about the progressive, neurodegenerative disease. But she soon learned there is no treatment and no cure. Nothing much had changed in the nearly 75 years since the disease killed New York Yankees legend Lou Gehrig, she said.
That evening, the Frates family gathered and Pete laid out his plan: “There will be no wallowing,” Nancy Frates recalled him saying. “We’re not looking back. We’re looking forward. ’ … He said he was going to change the trajectory of the disease, and he was going to get it in front of philanthropists like Bill Gates.”
Within a week, friends and family had created Team Frate Train, which participated in ALS fundraising events and provided whatever help Pete needed as his physical abilities declined.
Nancy Frates dates the beginning of last year’s Ice Bucket Challenge to July 27, 2014. That’s when Pete Frates’ college roommate, Tim Holden, dumped a bucket of ice water on his head while wearing a pair of Boston College shorts (in Pete’s honor) and a “Quinn for the Win” T-shirt (in honor of another friend Pat Quinn, who also has ALS).
Holden, who lives in Manhattan, sent the video to three buddies from Boston College and challenged them to repeat the act.
From there, it went viral.
Pete Frates already had 3,500 Facebook followers. Many were college and professional athletes he’d met or known as a Division One college player and as a professional player in Germany. It didn’t take long for them to jump in.
Players from the Boston Bruins, the Red Sox and the New England Patriots posted videos of ice-water dumps. Pete’s Uncle Artie made himself into a human Bloody Mary, complete with tomato juice and celery. Another Boston-area offering showed a bunch of Kennedy grandchildren, along with matriarch Ethel Kennedy, soaking themselves in ice water on that famous Cape Cod lawn.
Eventually, Justin Timberlake and other celebrities got into the act. But the Frates family’s favorite video came from Bill Gates, the philanthropist Pete had promised to reach on the day he was diagnosed two years earlier.
Today, Pete is paralyzed and can no longer swallow or speak. A ventilator helps him breathe, and a feeding tube provides food and water. He communicates with a computer that allows him to type by moving his eyes to the keys. A voice-generating device can speak the words he has typed.
“He calls himself the bionic man,” Nancy Frates said. “He lives solely on technology and machines.”
Despite his disabilities, Nancy Frates said her son Pete, now 30, inspires her to “wake up every day and be positive.”
“He’s given me my mission in life. I’m going to save my son. And if it doesn’t happen in time for him, I’m going to work so that no other mother has to go through what I’m going through. … It’s wonderful that I get to share my son’s story and keep the momentum going.”