'Ice Bucket Challenge' Raises 13.3 Million for ALS, Taylor Swift, Oprah Participate

Aug 18, 2014 02:21 PM EDT

Ice Bucket Challenge
''Today Show'' host Matt Lauer has ice water dumped over his head as part of the ''Ice Bucket Challenge,'' which raises money for ALS (Today's Show)

The "Ice Bucket Challenge" has gone viral around the world, raising $13.3 million as of Sunday for amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

The challenge 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.)

The "Ice Bucket Challenge" became a national phenomenon after Pete Frates, a 29-year-old former college baseball player who has ALS, heard about the idea and posted a video of himself bouncing his head to "Ice Ice Baby," the 1989 hit song by the rapper Vanilla Ice ("Ice water and ALS are a bad mix," he posted on his Facebook page). He then challenged some friends, and the trend spread through Boston and then across the web until last week, when celebrities such as Oprah, Matt Lauer, Bill Gates, and Taylor Swift added their names to the list.

The challenge has been shared by more than 1.2 million people on Facebook between June 1 and Aug. 13 and mentioned over 2.2 million times on Twitter since July 29. Donations to the ALS Association have also dramatically increased; 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. That number is expected to rise, as there have been about 260,000 new donors including some large corporations.

"Did we ever imagine the level of awareness or the money that is coming in? In our dreams we did," said Mr. Frates's mother, Nancy Frates.

About 30,000 Americans currently are victims of ALS, which attacks nerve cells and ultimately leads to total paralysis, though the mind remains intact. Life expectancy is typically two to five years from the time of diagnosis.

Ms. Frates told the New York Times 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 that he did not want to whine, but would instead use the diagnosis as an opportunity to positively affect other people's lives.

Over the past several months, Mr. Frates has lost the ability to move his arms and legs and now communicates through eye-gaze technology, his mother said. Last year, he married Julie Frates, whom he met eight months before he learned that he had ALS. The couple is expecting a baby in September.

In a video last December, Mr. Frates encouraged people to raise awareness for the devastating disease, saying: "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."