People around the country have ALS challenge down cold



On Wednesday night, Ben Roethlisberger and Troy Polamalu took the challenge after practice. Last week, Sidney Crosby did it using snow, and the day after, Marc-Andre Fleury did it in a banana costume.

It seems that everyone, from Jimmy Fallon to Ethel Kennedy, is doing it and taking part in the ice bucket challenge, which has erupted in a national effort to spread awareness and raise funds for the ALS Association, the organization leading the effort to find a cure for amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

Participants in the ice bucket challenge post videos or a photo of themselves being drenched with ice water and then nominate three other people to do the same, spreading awareness in a chain reaction. Those who forgo the ice bath are asked to donate to an ALS organization instead.

Spurred on by social media, the response to the challenge has caused a tidal wave of awareness and money. In the two-week period since the idea truly took off on July 29, the national ALS Association has received $5.7 million in donations, compared with the $1.2 million it received during the same period last year. It also accumulated 106,955 new donors in that same time span.

“This challenge has been very successful, not just in terms of financial and research support, but also for families and patients dealing with the disease, letting them know they’re not alone,” said Sasa Zivkovic, associate professor of neurology at the University of Pittsburgh.

ALS is a progressive neurodegenerative disease that deteriorates the brain’s ability to control muscle movement. The disease often inhibits muscles used for speaking, eating, and breathing, leading to complete paralysis and eventually death. There is no cure for ALS.

The local support for the challenge started Aug. 6, when Penguins forward Craig Adams and his family challenged teammates Sidney Crosby, Chris Kunitz and Bill Guerin.

“After Craig Adams and his family did the challenge, a ton of people in the community participated and it started to take off in Pittsburgh,” said Merritt Speir, executive director of the Western Pennsylvania chapter of the ALS Association.

Since then, the chapter has already reached 53 percent of its $500,000 fundraising goal for its annual ALS walk in September. “There has also been an increase in general donations,” Ms. Speir said. “We definitely can credit the challenge for that.”

Ms. Speir pointed to the simple ingenuity of the idea and its use of social media to spread awareness as another reason why the challenge has seen such success.

“This idea, as crazy as it seems, has been something people have been able to latch on to. I don’t think we’ve had this kind of recognition since Lou Gehrig was alive and diagnosed.”

The idea for the challenge originated with Pete Frates, who was diagnosed with ALS two years ago at the age of 27, and a fellow ALS patient, Pat Quinn.

“My son always says go big or go home,” said John Frates, Pete’s father. Pete, who has lost his ability to speak, is a former captain for the Boston College baseball team.

“He’s always been a captain and a leader not for himself, but for others, and now he is the captain of ALS awareness. I don't think this ever would have happened without my son, because he agreed to put himself out there for Facebook and on website pages and people can really see the progression of the disease and how it ravages his life.”

“The beauty of this challenge is that it is a simple act of saying, hey, I’m here for you,” Mr. Frates said. “And the fact that you’re challenging others to see it and do it. It’s human outreach and refusing to accept the disease.”

Meanwhile, others are joining the challenge.

State Sen. Jay Costa, D-Forest Hills, has been challenged and plans to challenge other local officials.

To learn more about the challenge and ALS, visit cure4als.org


Campbell North: cnorth@post-gazette.com or 412-263-1613.

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