Charities Seek Their Own Ice Bucket – Wall Street Journal

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Charities Seek Their Own Ice Bucket – Wall Street Journalby wpjljron.Charities Seek Their Own Ice Bucket – Wall Street JournalCelebrities from Bill Gates to Jimmy Fallon to Justin Timberlake have dumped buckets of ice of themselves as a campaign to raise awareness for ALS goes viral. How much has the campaign actually raised? ALS Association chief chapter relations officer Lance Slaughter joins Lunch Break with Tanya Rivero. (Photo: AP) The runaway success of the […]

Celebrities from Bill Gates to Jimmy Fallon to Justin Timberlake have dumped buckets of ice of themselves as a campaign to raise awareness for ALS goes viral. How much has the campaign actually raised? ALS Association chief chapter relations officer Lance Slaughter joins Lunch Break with Tanya Rivero. (Photo: AP)

The runaway success of the ice-bucket challenge—garnering as many as 1,887 tweets a minute Monday—has other health charities hoping to capture some of the boost in awareness and fundraising that ALS has received during the past few weeks.

The way the challenge works is you dump ice water on yourself, post a video if it on social media and tag several friends, daring them to do the same within 24 hours or else donate money to an ALS charity. Many people do both.

Already, similar campaigns are popping up for diseases both rare and more commonly known, and nonprofit leaders are brainstorming to come up with the next viral hit.

Amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s disease, is a rare, fatal disease that wasn’t often at the forefront of advocacy efforts. Now, celebrities from Microsoft Chairman

Bill Gates

to singing sensation

Taylor Swift,

as well as teens, athletes and lots of others, have spotlighted the disease in their videos.

The biggest beneficiary has been the ALS Association, an advocacy, research and care organization with 38 chapters across the country, whose national office helped capitalize on the campaign. On Aug. 8, it sent an email to about 60,000 people on its mailing list encouraging them to do the ice-bucket challenge and include a link to the ALS Association in their posts. Additionally, about eight of its chapters sent out one or two emails about the challenge, according to a spokeswoman for the association, who said the influx of donations began before any emails went out.

Bill Gates takes the ALS ice-bucket challenge.

As of Monday morning, the nonprofit had raised $15.6 million in donations between July 29 and Aug. 18, compared with $1.8 million during the same period last year. Meanwhile, ALS Therapy Development Institute (TDI), a Boston-based nonprofit biotechnology organization, said it has raised $550,000 since Aug. 3, compared with about $110,000 during the same time period last year. And the New York City-based Project ALS, a nonprofit dedicated to funding scientific research, has raised about $116,000 over the last two weeks compared with just $1,000 from a handful of donors last year. They’ve gotten longtime donors such as actors

Ben Stiller

and the New York Metsto call out their organization in recent videos posted on You Tube.

Fundraising experts say the challenge had the perfect storm of elements and will be hard to replicate.

“This is an amazing phenomenon,” said

David Hessekiel,

president of the Peer to Peer Professional Forum, a Rye, N.Y., trade association for nonprofits. “This happened because it touched people, because it’s fun, because it’s easy, because it’s the summer and a great goofy thing to do.”

As with the Livestrong Foundation’s yellow bracelets to honor cancer patients, Mr. Hessekiel predicted there will be many attempts to repeat the ice bucket’s success. “Any time something like this hits the scene you’ll see hundreds of copycats,” he said. “Will they raise millions of dollars? Probably not. But some organizations may raise substantial amounts of money.”

Already, similar campaigns have surfaced. A supporter of the American Foundation for Suicide Prevention last week started a “Doubtfire Face for Suicide Prevention,” campaign, in which supporters are asked to honor the late

Robin Williams

by replicating his pie-in-the-face from the movie “Mrs. Doubtfire.”

Julie Raskin,

executive director of Congenital Hyperinsulinism International, said members brainstormed for a similar campaign at a conference in New Jersey over the weekend.

“We kind of studied it,” said Ms. Raskin, “like, ‘Oh, why did this happen?’ It was really cool for the rare-disease community. I feel like we kind of own this. Even though we’re not raising money from it, the fact that it happened is exciting.”

The group hopes to launch their own campaign called “Eat pie for HI.” Hyperinsulinism is called HI for short and one of the hallmarks of the disease is that affected children often require more carbohydrates and sugar than normal children.

Mary Dunkle,

vice president for communications for the National Organization for Rare Disorders (NORD), a Washington, D.C. nonprofit with 212 member organizations, said the challenge gives hope to other rare-disease nonprofits.

“To some extent the Internet does level the playing field and provide opportunities even for people with extremely rare disease to generate public support,” she said.

At a social-media session at the group’s annual conference in October,

Glenn O’Neill

will talk about his success in creating a viral video that helped his Cure Sanfilippo Foundation raise more than $1 million to fund a clinical trial to develop a cure for the rare, genetic disease his 4-year-old daughter, Eliza, was born with.

Now, the South Carolina resident is hoping to raise the remaining $700,000 to fulfill their $2 million goal with a social-media challenge inspired by the ice bucket. He put out a call for supporters last week to film themselves singing two lines of a song on Facebook and challenge five friends to do the same or donate $50 to the Saving Eliza fund. “In your Facebook post, please include #sing2lines and #savingeliza,” the post on their GoFundMe site says. “That is how these things go viral.”

Gene Tempel, founding dean of the Indiana University Lilly Family School of Philanthropy, said the next step for ALS charities is to figure out how to engage with the new donors again. Fatigue with copycats could become an issue, though it’s too early to tell, he said. “If you can find something that relates to the organization and you can get somebody of note to head it up, that will grab attention and it might take off,” he said.

For ALS charities, the campaign has widened the fundraising base beyond a tight group of mostly friends and family members of the 20,000 to 30,000 people in the U.S. with the disease. “This campaign has changed the ALS landscape forever,” said

Steve Perrin,

president of ALS (TDI). “Everybody in this country knows what ALS is now and that is going to make it go from an orphan disease that nobody cared about to a disease that everybody I bump into has an affiliation with.”

There have been more than 4.2 million tweets mentioning the challenge or ALS since July 29, according to Twitter. There were 2.4 million videos related to the ice-bucket challenge posted on Facebook between June 1 and Aug. 17. The activity centered around Boston, according to Facebook, which many attribute to the well-established network of

Pete Frates,

a 29-year-old former captain of the Boston College baseball team diagnosed with ALS two years ago.

Some have criticized the dare as a stunt designed to avoid donating money. But ALS nonprofits say the unprecedented increase in fundraising they are seeing suggests that many people are both dumping ice and donating money.

The challenge seemed to start earlier in the summer with pro golfers—as well as “Today” show host

Matt Lauer

— doing it, though the stunt wasn’t disease- or charity-specific at that point.

On July 15, golfer Chris Kennedy invoked ALS in his challenge, tagging a cousin in Pelham, N.Y., whose husband has had ALS for more than a decade. The challenge took off in Pelham, moving to nearby Yonkers, and then Boston, and a month later it’s still going strong.

Write to Sumathi Reddy at [email protected]

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