How ALS Hijacked the Ice Bucket Challenge and Raised Millions
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The Fiscal Times
August 18, 2014

If you haven’t heard of the ice bucket challenge or seen people drop a bucket of ice water on their heads on one of the social media sites – you must be living under a rock (or you’ve been on vacation and not checked your smartphone, social media or anything else).

For almost a month now, many people, including celebrities, have been called on by friends and family to dump a bucket of ice water on their head within 24 hours or make a donation to the ALS Association to raise awareness for the amyotrophic lateral sclerosis disease. Those who have taken up the challenge then post videos online and call on more people to continue the chain. And on it goes.

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Celebrities and leaders who have so far accepted the challenge include Mark Zuckerberg, Oprah, LeBron James, Bill Gates, Justin Timberlake, Chris Christie and Steven Spielberg. Many have called for President Obama to take up the challenge – but he’s yet to do so.

ALS, also known as Lou Gehrig’s disease, is a rare progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, eventually leading to a loss of muscle control. Death often occurs within two to five years of diagnosis, as there’s no cure currently and only one drug approved by the Food and Drug Administration that modestly extends survival.

The ALS ice bucket challenge was started on July 29 by Pete Frates, a 29-year-old Boston College alumnus and former athlete with the college’s baseball team who has lived with ALS since 2012. With the help of his family, his challenge quickly went viral on Facebook and Twitter and soon money was flowing in.

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Many ice bucket challenges, however, had already taken place earlier in the year, though they weren’t connected to ALS. It’s not exactly clear who called the first challenge.

Some think it may have started with firefighters in the spring who wanted to raise money for various charities, according to The Columbus Dispatch. Then, in June, motocross celebrity Jeremy McGrath took the challenge and called on some friends, including American pro golfer Rickie Fowler, to take the challenge or make a donation to Bethematch.org. It then spread around the pro golf world. At that point, there was no mention of ALS. People would simply ask to give to any charity of their choice.

It’s not clear why the ALS Association has suddenly become the only charity mentioned during the millions of ice bucket challenges that followed Pete Frates’s challenge. But what is clear is that he has succeeded in bringing tremendous awareness, and big money, to his cause.

As of Friday, the ALS Association had received $9.5 million in donations since July 29, according to the ALS Association. Three days later, it had received an additional $6.1 million, bringing the total as of this morning to $15.6 million – almost nine times as much as the ALS Association raised in the same period last year.

In part, this is due to the fact that while most people actually take the challenge, many also give to the association. ALS spends most of the money it receives in funding research and care services and on public policy.

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Marine Cole has been covering finance and business for a decade and has written for publications that include The Wall Street Journal, Crain's New York Business, and AdvertisingAge.