By now, who hasn’t heard of the Ice Bucket Challenge?
Dozens of videos appear to be popping up by the minute on the Internet of CEOs, billionaires, movie stars, athletes, even former President George W. Bush, getting doused — with reactions to the icy bath ranging from the sublime to the silly.
The social media movement that started just a few weeks ago has grown so quickly it is now morphing into something much bigger. Now, some folks are dunking themselves — fully clothed — into pools in the name of charity.
Most are getting wet to raise money and awareness for a disease few can recite by its full name: amyotrophic lateral sclerosis.
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The last time ALS got this much national attention, New York Yankees’ baseball great Lou Gehrig was giving his “I am the luckiest man alive” speech.
That was 75 years ago. Since then, little attention and even less funding have gone toward the progressive neurodegenerative disease, which quickly takes away a person’s ability to walk, speak, swallow and breathe. There are no survivor groups for those with Lou Gehrig’s Disease because there are no survivors. It’s 100 percent fatal.
“They used to call it the suicide disease, because when people got it they would put a gun to their head rather than go through it,” said retired banker Al McLeod.
Before McLeod took the Ice Bucket Challenge himself, along with several others aboard Capt. Skip Bradeen’s fishing boat in the Florida Keys, he teared up while recalling how his mother, Coo, suffered with ALS.
“She couldn’t move from here down,” he said, pointing to his nose. “But her brain was fine. I remember we had a band wrapped around her head with a stick on it so she could point to an ABC board. It would take her 10 to 15 minutes to do a sentence. It wore her out.”
In 1986, just three years after she was diagnosed, Coo McLeod lost her battle to ALS, just like somebody does in America every 90 minutes.
So while some people have called the Ice Bucket Challenge a waste of water, or just plain annoying, McLeod thinks its about time the nation pay attention to a disease that affects 30,000 Americans, but has no cure and not even any good treatment options.
That’s ditto for Spirit Airlines CEO Ben Baldanza, who also lost his mother to ALS in 1983 when he was a college junior. He sadly remembers how she spent the last year or so of her life in bed, her inquisitive brain intact, but unable to do anything for herself.
“I’m not happy she died, but when she did, I was relieved because it was clear she was in a better place,” he said.
On Friday morning, two members of Broward County Fire and Rescue each dumped a bucket of water on Baldanza as airline employees cheered in the background.
“There has been some commentary in the media about how it’s a narcissistic act to do the ice bucket thing; for people just to get media for themselves,” Baldanza said. “But in reality, people challenging others to donate has made the difference. If I just made a private donation to ALS, which I have done a number of times in my life, it would not have generated as much awareness and donations from my friends and work colleagues.”
The dousing has worked. Since July 29, the ALS Association, which includes contributions to its 38 chapters, has received $53.3 million, most of it in the last 10 days. Some contributions have come from existing donors, but most have come from a whopping 1.1 million new donors. During the same time period last year, only $2.2 million was raised, according to the ALS Association.
Barbara Newhouse, President and CEO of the national ALS Association, said in a statement that she hopes in 10 to 20 years the Ice Bucket Challenge phenomenon will be looked at as a game-changer for the disease, which kills people within two to five years of diagnosis.
And when it all started, it had nothing to do with ALS.
While the exact beginning is murky, one of the first challenges was posted on Instagram on June 22, with motorcross racer Jeremy McGrath posting a video of himself pouring ice water over his head and challenging Vanilla Ice (Rob Van Winkle) and athletes Rick Fowler and Jimmie Johnson to do the same, or pay $100 to a charity.
The challenges posted on social media slowly gained steam. Golfer Greg Norman eventually challenged Today host Matt Lauer, who was doused on the popular morning program. At that point, challengers could donate to any charity of their choice.
But one day a video of a challenge landed on the Facebook page of Pat Quinn of Yonkers, New York, who was diagnosed with ALS in 2013. He shared it with former Boston College baseball player Pete Frates, who at age 27 got his bad news. Frates took the challenge at the end of July to Strike OUT ALS. That’s when it took off for ALS.
The challenge keeps going as each person who gets an ice water dousing nominates three others to do the same thing within 24 hours or donate $100. And it has continued because of star power. Justin Timberlake challenged Tonight Show host Jimmy Fallon, who did it on his program with his band, the Roots.
Soon there were top 10 lists of the best Ice Bucket Challenge videos. One had Microsoft CEO Bill Gates designing and building a special contraption to dump his bucket of ice water.
So far, President Barack Obama has not answered the challenge of Justin Bieber, but George W. Bush and former presidential candidate Mitt Romney have. The Who’s Who list of those who have been doused continues to grow: Lady Gaga, Oprah, Adam Levine, Carrie Underwood, Ethel Kennedy, Lebron James, Ben Affleck, Martha Stewart, William Shatner, Mark Zuckerberg and Tim Cook.
Even Kermit the Frog answered his challenge, proclaiming: “I’m the first to do it completely naked.”
In South Florida, Arsht Center President & CEO John Richard accepted his son’s challenge, and was blasted from water in all directions from a pandemonium water scene from the popular summer show H2Ombre.
And 22 employees of Kreps DeMaria Public Relations & Marketing firm did a twist on the Ice Bucket Challenge with a Cannonball Challenge, in which they all jumped into a pool while wearing their business attire. The firm donated $1,000 each to three local charities.
Sissy DeMaria, president of the firm, said she thinks the Ice Bucket Challenge has gone viral because: “It’s a new culture where everybody wants to post and show they are doing something nice and charitable.”
Alissa Gutierrez, director of marketing and communications for the Florida Chapter of ALS, said the entire ALS community is grateful.
“I was talking to one of our neurologists, and he told me the only difference about getting an ALS diagnosis today and in 1939 when Lou Gehrig got it, was that today you get a better wheelchair,” she said.
While only about $102,000 has been donated directly to the Florida chapter, which services the 1,500 to 1,600 Floridians who suffer from the disease, she said it’s an “incredible windfall out of nowhere.”
But more is needed, with an average cost of $250,000 to care for a person stricken with ALS. And with more money needed to fund research for treatment and for a cure.
“ALS is not incurable, it’s underfunded,” Gutierrez said. “This is the kind of shot in the arm we needed. Now our responsibility is to harness this momentum and keep it going.”