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ALS Association ready for Ice Bucket Challenge follow-up


WASHINGTON — It was a social media success story that came out of nowhere. Two summers ago, people all over the country began pouring freezing water over their heads to raise money for ALS, also known as Lou Gehrig’s Disease. The shared videos became the Ice Bucket Challenge, and now the ALS Association is looking for an encore.

“This was a social media phenomena for good,” said Nancy Frates, whose son Pete helped spur the Ice Bucket Challenge’s popularity. Pete Frates was diagnosed with ALS in 2012. The former Boston College baseball star wrote on Facebook for some of his famous friends to take the challenge and dump a bucket of cold water over their heads. It spread. Over the next eight weeks, in 2014, more than 18 million videos were shared.

The impact for the ALS Association was transformative. The debilitating disease has no cure. About 5,000 people a year are diagnosed with ALS in the United States. But millions more dollars are now going to research because of the Ice Bucket Challenge. Just this week, researchers announced the discovery of a new gene linked to ALS. The groundbreaking research was funded by money that came from the Ice Bucket Challenge.

“220 million dollars were raised worldwide,” Brian Frederick, vice president for communications of the ALS Association said. “This allowed us to triple the amount of money we spend every year on research.”

The ALS Association wants to make August ALS month each year. ALS activists expect people will once again share Ice Bucket Challenge videos, but this year they are focusing more on donations than awareness.

Nancy Frates says the new focus does not diminish the impact all those videos continue to have.

“If you poured ice water over your head and said ALS, what you did for our community is so overwhelming, you literally changed thousands of peoples’ lives,” Frates said.

The ALS Association has spent $71 million of the Ice Bucket Challenge donations collected so far, with $19 million going to research in 2015 alone. Federal funding for ALS research totaled $49 million dollars in 2015.

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