Pete Frates can no longer speak. But in the past two and a half weeks, a video posted on Facebook by the 29-year-old former college baseball player has inspired everyone from Bill Gates and LeBron James to Chris Christie and Taylor Swift to dump a bucket of ice on their heads and speak out for his cause.
The Ice Bucket Challenge has lit social media on fire, raising both money and awareness for amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease. About 30,000 Americans now have the rare disease, which attacks nerve cells and ultimately leads to total paralysis, though the mind remains sharp. Life expectancy is typically two to five years from the time of diagnosis.
The stunt goes like this: People make a video of themselves dumping a bucket of ice water on their heads, post it on Facebook, Instagram or other social media sites, and then challenge friends to do the same within 24 hours or donate $100 to ALS. (Many do both.)
People have shared more than 1.2 million videos on Facebook between June 1 and Aug. 13 and mentioned the phenomenon more than 2.2 million times on Twitter since July 29, according to those sites. Donations to the ALS Association have spiked. As of Sunday, the association said it had received $13.3 million in donations since July 29, compared with $1.7 million during the same period last year. It said there were about 260,000 new donors. (With a spate of celebrities and business executives joining in over the past few days and pledging contributions, that number is expected to rise.)
The Ice Bucket Challenge had been making the rounds on the Internet for several weeks before it was tied to ALS. Matt Lauer, host of NBC’s “Today Show,” had water poured over his head July 15 after being challenged by golfer Greg Norman.
Lauer said he would donate money to the Hospice of Palm Beach County. He challenged Brian Williams, Martha Stewart and Howard Stern.
In late July, Frates learned about the challenge from his friend Pat Quinn, a New Yorker who also has ALS, and wanted to turn the trend into a fundraiser for the disease.
Frates nominated himself for the challenge. Instead of having ice water poured on his head — “ice water and ALS are a bad mix,” he said on his Facebook page — he posted a video of himself bouncing his head to “Ice Ice Baby,” the 1989 hit song by the rapper Vanilla Ice. He challenged some friends, and the stunt spread quickly through Boston circles, then across the Web until last week when a parade of boldfaced names joined in. (Last week, Frates again took the challenge, this time having ice dumped on his head at the Boston Red Sox’s Fenway Park.)
“Did we ever imagine the level of awareness or the money that is coming in? In our dreams we did,” said Frates’ mother, Nancy Frates.
There has been a backlash. Some have criticized the campaign for so-called slacktivism, where people will click and post online for social causes with little actual impact on the cause. “There are a lot of things wrong with the Ice Bucket Challenge, but the most annoying is that it’s basically narcissism masked as altruism,” said Arielle Pardes, a writer for Vice. On Slate, Will Oremus urged people to take the “no ice bucket challenge” and just donate the money.
Frates said that her son, the former captain of the Boston College baseball team, had been “living the life” when he called a family meeting in 2012. He revealed his illness and said he didn’t want to whine, but would instead use the diagnosis as an opportunity to positively affect other people’s lives.
The disease has progressed quickly in the past six months. Frates has lost the ability to move his arms and legs and now communicates through eye-gaze technology, his mother said. He was married last year to Julie Frates, whom he met eight months before he learned he had ALS. They are expecting a baby in September.
In a video in December, Frates said: “The story right now goes: You’ve got ALS, have it for a little while, a long while, but either way, the end is always the same. ALS always wins. So in order to rewrite the end of it, we need to raise awareness, money.”