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Challenge is no joke for ALS charities

After Jon Bon Jovi was doused with a tub of ice water (by New Jersey Gov. Chris Christie and Patriots owner Robert Kraft, no less), the smiling rocker called out, “Thank you, Buffalo.”

So at least the wannabe Buffalo Bills owner has a sense of humor about the people who think he’s all wet.

Laughs are part of the ice bucket challenge, the charitable dare that took over social media this month, and millions are in on the joke.

More than 2.4 million videos have been posted to Facebook as of Tuesday showing good-natured – and in some cases extremely clever – responses to the viral chain letter-like challenge to pour freezing water over one’s head or pay the price – $100 to support the fight against amyotrophic lateral sclerosis, known as ALS or Lou Gehrig’s disease.

Judging by reports from the national ALS Association, most participants are doing both. As of Tuesday, the association has taken in $22.9 million in donations, from both people already familiar with the cause and from 453,210 new contributors.

That is $21 million more than the group collected in the same three-week period last year.

And it doesn’t include money given to other ALS-related charities, like Project A.L.S., with $140,000 from about 2,200 donors in two weeks, and Team Gleason, which was started by Steve Gleason, a former player with the New Orleans Saints who now has ALS, to provide current technology to other ALS patients. ALS is a progressive and usually terminal neurodegenerative disease that often strikes people while they are young.

Gleason’s former teammates are answering the call, including quarterback Drew Brees, who donated $10,000.

The Buffalo Bills are joining in, too. EJ Manuel and Marquise Goodwin of the Buffalo Bills stood under the buckets last week; the defensive line took the challenge Monday, and by Tuesday the entire team got the big, soaking chill at its Pittsford training camp.

Police departments in the Southtowns – Orchard Park, Hamburg and West Seneca – did the challenge in uniform.

So did former mayoral and School Board candidate Sergio Rodriguez, who was in a pressed white shirt and tie when he got soaked Monday.

“I decided to go all in,” he said afterward.

Erie Canal Harbor Development Corp. Robert Gioia and board member Sam Hoyt took a different route, donning shorts and T-shirts when they took the challenge Monday.

Across the country, Facebook friends and Twitter followers are splashing their support for ALS treatment and research across social media, much to the surprise, and delight, of the ALS groups that are benefiting from it.

For University at Buffalo researcher Gregory D. Saxton, however, the explosive popularity of the ice bucket challenge is no mystery. He has been studying online fundraising for a while and is the co-author, with Lili Wang, of “The Social Network Effect: The Determinants of Giving Through Social Media.” He has some observations about how social media causes, sometimes called “slacktivism” because they take such little involvement, work.

“In this area, anything that could get you more attention would be good. Humor works especially well,” Saxton said. “It’s a different kind of donor that you’re chasing – they tend to give smaller amounts, with no strings attached.”

In his paper, he describes “the social network effect,” which is the cumulative power of the web audience to boost a fundraising cause. The early involvement of famous people likely set the ice bucket challenge apart.

“Overall, our findings suggest attention-getting projects, social pressures, and ‘casual’ and ‘impulse donating’ are driving contributions more than ‘rational’ concerns over efficiency,” he wrote.

Attention-getting, like the front-loader tractor buckets pouring tens of gallons of icy water on the Zac Brown Band, or Bill Gates constructing a bucket-tipping canopy to soak himself in answer to Facebook billionaire Mark Zuckerberg’s challenge.

As the challenge’s popularity has escalated in the past two weeks, so have the efforts to make the challenge more entertaining. College football teams have been sprayed from a fire hose; Hollywood types such as Ben Affleck, Robert Downey Jr. and Ashton Kutcher add their pools to the mix, while Oprah simply screamed her lungs out.

Former Buffalo Sabres goalie Ryan Miller, now with the Vancouver Canucks, challenged actor Charlie Sheen, who stars in the show “Anger Management” with Miller’s wife, Noureen DeWulf. Sheen skipped the ice and poured cold, hard cash on his head, $10,000 in all.

“Let’s face it, ice is going to melt, but this money is actually going to help people,” Sheen said.

Also flashing the cash: Taylor Swift and Jaime King, who held fistfuls of $100 bills before icing themselves and friends.

Without the money, the whole thing could be viewed as a waste of water. Many celebrities are including links on their video posts to the ALS Association ( or Project A.L.S. (, both of which had to hustle to catch up with the phenomenon by adding donation links to their websites.

The giving means everything, as Steve Gleason says on his website,, before taking the ice bucket challenge in his wheelchair.

“In the U.S., every 90 minutes an ALS patient dies,” he says. “We could have 6 billion people dump ice over their heads and it wouldn’t change the brutal and silent death over 100,000 people worldwide will experience over the next 12 months. Step up, donate, get involved, care for a patient.”

Although ALS is not a common illness, the charities that are receiving most of the new money are recognized for their effective use of funding. The ALS Association directs resources to research and patient services, while Project A.L.S. is devoted entirely to research and cooperative efforts worldwide.

Valerie Estess, Project A.L.S. cofounder, said ALS is closely related to Alzheimer’s and Parkinson’s, and advances in one area could have significant effects on the other illnesses.

“Our collaborations are coming together to bear fruit,” Estess said. “Researchers from Harvard and Columbia have created models of the disease outside the body using stem cells from patients. This gives us our first opportunity ever to look at the motor neurons from these patients.”

They also are finding connections between ALS and diabetes and cancer, which could indicate that treatments for one illness might have applications in fighting the others.

“If you unlock the mysteries of ALS, you are going to shine a light on diseases that affect millions and millions of people,” she said.

There has been minor backlash to the challenge, some from critics who believe it should do more to raise understanding along with money and some from people who say the money should go to more common illnesses.


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