Philanthropy

Ice Bucket a 'transformational moment': ALS group

ALS stunned by millions of dollars
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ALS stunned by millions of dollars

The social media-inspired "Ice Bucket Challenge" to raise awareness and money to fight ALS, also known as Lou Gehrig's disease, has become a "transformational moment," ALS Association Development Officer Lance Slaughter told CNBC on Friday.

"Three weeks ago, half the population didn't know what ALS is," Slaughter said in a "Squawk Box" interview. "Now millions of people do, and that's generated hundreds of thousands of contributors to the cause."

And millions of dollars. The association said Friday it has received $9.5 million from July 29 to Aug. 15—that's nearly 500 percent more than the same period last year.

Every day there's news of another celebrity, politician or corporate CEO taking the challenge, which calls for people to dump a bucket of ice water over their heads or donate to charity and then challenge someone else (and make sure to post it on social media). Judging by the outpouring, people are taking the plunge and opening their wallets.

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Nominated by his marketing chief, Apple CEO Tim Cook on Thursday posted a video of himself taking the challenge. He tweeted: Took the ALS #IceBucketChallenge with @michaelfranti at Apple. Challenge Bob Iger and @drdre. http://youtu.be/uk-JADHkHlI

In accepting the challenge, Cook joined other high-profile CEOs who had already done it, including Facebook's Mark Zuckerberg and Microsoft's Satya Nadella.

Twitter reverb shows the social movement

CNBC's Scott Wapner accepted the challenge this week, and then got Twitter CEO Dick Costolo to do it. Costolo tweeted: I've made a donation to stomp out ALS. I challenge @spencerrascoff. Your turn @carlquintanilla #icebucketchallenge https://vine.co/v/MY63JJD3dWu

Costolo called out CNBC's Carl Quintanilla, who did it and challenged Berkshire Hathaway CEO Warren Buffett, T-Mobile U.S. CEO John Legere, and Amazon CEO Jeff Bezos. Quintanilla tweeted: I accept the challenge! #icebucketchallenge @CNBC https://vine.co/v/MY63Yel2YMa

Slaughter said he's more pleased than surprised by the popularity of the challenge. "When you are doing this kind of work, you are waiting for this transformational moment."

That transformational moment started on July 31 when 29-year-old Pete Frates, a former Boston College baseball star who's been living with ALS for two years, threw down the gauntlet and nominated himself for the ‪#‎icebucketchallenge‬.

At the time, Frates didn't actually do it, saying "ice water and ALS are a bad mix." But that didn't last. The Boston Red Sox got Frates to do it Thursday in front of the Green Monster at Fenway Park.

ALS, short for amyotrophic lateral sclerosis, is a progressive, muscle-wasting disorder that affects about 30,000 Americans at any given time. About 5,600 people in the U.S. are diagnosed with ALS each year, and life expectancy is typically about two to five years. There is no cure for ALS, and current treatments do little to stop its progression.

What is ALS?
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What is ALS?

ALS is commonly referred to as Lou Gehrig's disease—named for the baseball great who drew international attention to the disorder when it forced him to retire in 1939.

While the recent "Ice Bucket Challenge" has also increased awareness, Slaughter said more private funding is needed. The group said its advocacy efforts have generated more than $365 million for ALS research over the past 10 years.

—By CNBC's Matthew J. Belvedere