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Icy water, donations to fight ALS flow with social media's help

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Visit the ALS Association Western Pennsylvania Chapter: http://webwpawv.alsa.org

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Tuesday, Aug. 19, 2014, 10:27 p.m.
 

Odd, random videos of seemingly unconnected celebrities popped up on Terry Divelbliss's Facebook feed a few weeks ago.

Oprah Winfrey, Bill Gates, Justin Timberlake, Sidney Crosby — in clip after clip, the rich and famous poured buckets of icy water over their heads, then challenged three others to do the same.

“I'm thinking, ‘What kind of stupid celebrity trend is this?' ” said Divelbliss, 46, of Peters. “Then I saw what it was for.”

The ALS Ice Bucket Challenge aims to raise money and awareness to fight amyotrophic lateral sclerosis, the neurodegenerative condition better known as Lou Gehrig's Disease.

And it is lightning in a bottle, said Merritt Spier, executive director of the ALS Association's Western Pennsylvania Chapter.

“A couple weeks ago, we were thinking: ‘What can we do to bring awareness to ALS?' Half of the country doesn't know what it is, and here we are 75 years after Lou Gehrig, and there's no cure and very little understanding,” Spier said. “Then all of a sudden, this grassroots, social media phenomenon happens.”

With muscle weakness, ALS patients lose the ability to walk, speak, breathe and swallow. The disease is fatal.

Since July 29, around the time the ice bucket challenge became a social media sensation, the national ALS Association reported $22.9 million in donations. During the same period last year, the association raised $1.9 million.

Nearly half a million of the donors are first-time givers.

“From Oprah to President Obama to Charlie Sheen, it's taken all kinds of forms,” Spier said. “It's resulted in a huge increase in donations, a huge increase in awareness, and this disease has long needed both.”

Steelers minority owner Thomas Tull, CEO of Legendary Pictures, took the challenge in a YouTube video — with help from actor Bryan Cranston – and challenged Pittsburgh Pirates player Andrew McCutchen, Steeler Troy Polamalu and actor Guillermo del Toro.

The ice bucket challenge traces back to friends of Pete Frates, 29, a former Boston College baseball player diagnosed in 2012. They challenged others to dump water as they did, or donate to the ALS Association.

“At first it was very much a Boston thing,” said Pittsburgh Penguins forward Craig Adams. “My wife's family is from out there, and we were out there seeing it all. We have a close connection to the disease, so we figured we would do it and call out a couple high-profile guys on the team.”

Adams' father-in-law, Paul Cellucci, a former governor of Massachusetts, died from ALS last year. Adams challenged Crosby , who posted a video and challenged three more Pens . Within days, the team's most recognizable faces, including Evgeni Malkin , Marc-Andre Fleury and owner Mario Lemieux , accepted the challenge.

Most celebrities dump water and donate money. Charlie Sheen poured $10,000 over his head, which he vowed to donate, then challenged other actors to do so.

“It just snowballed — or ice-balled,” Spier said.

Other nonprofits are taking note.

Arney Rosenblat of the National Multiple Sclerosis Society said charities seek imaginative ways to involve people, even if they are not directly affected by a disease. The MS Society recently started “Mud-fests,” in which runners “get dirty for a good cause” by navigating a muddy obstacle course.

“We're thrilled for the ALS Association,” Rosenblat said. “It is quite amazing, and you never know when something will just fire someone's imagination like that.”

Divelbliss completed the challenge on Tuesday in honor of his college fraternity brother Scott McGuire, who was diagnosed 17 years ago.

“He's been an inspiration,” Divelbliss said. “Physically, he's very constrained, but he's still very much alive and out in the world.”

ALS advocates realize this is a fad, Spier said, but officials here are thrilled with its timing: the Pittsburgh Walk to Defeat ALS is scheduled for Sept. 6. Last year, about 700 people signed up. This year, more than 1,700 intend to walk.

“I can't really describe how much it has meant for ALS awareness and fundraising,” said Adams, who chairs the event with his wife, Anne. “... It's more common than you realize, and it's a terrible diagnosis.”

The money raised locally will provide wheelchairs, home respite care, transportation and other services to ALS patients, Spier said.

National ALS Association officials vowed transparency in deciding how to spend what's raised.

“We want to be the best stewards of this incredible influx of support,” said Barbara Newhouse, president and CEO.

Chris Togneri is a Trib Total Media staff writer. He can be reached at 412-380-5632 or ctogneri@tribweb.com.

 

 

 
 


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