this Friday, Aug. 22, 2014 file photo, people pour
ice water over themselves during an "ice bucket
challenge" fund raising event in Bangkok. About
a thousand people turned out to raise money for the
fight against ALS, or Lou Gehrig's Disease.
couple of hours it took an official from the ALS
Association to return a reporter's call for comment, the
group's ubiquitous "ice bucket challenge" had
brought in a few million more dollars.
$100 million, the viral fundraising campaign for the
ailment better known as Lou Gehrig's Disease has put the
ALS group into the top ranks for medical charity
donations. Since the end of July, the money has been
sloshing in at a rate of about $9 million a week. Last
year, from July 29 to Aug. 26, the group raised just $2.6
caught everyone off-guard, none more so than the ALS
Association folks. But they know this is likely a one-off
phenomenon, and the group now faces the task of spending
all that money wisely. Research, care and advocacy are the
group's three main missions — but officials say they
don't know yet exactly how they'll use the astonishing
think even if I or any PR person at either a non-profit or
a for-profit company had all of the PR dollars in the
world to invest, no one would have come up with this
idea," says Carrie Munk, the association's
spokeswoman. "We realize there are responsibilities
that come with being good stewards of these dollars."
what's surprising is that ALS — or amyotrophic lateral
sclerosis — is one of those "orphan" diseases.
It is a neurodegenerative disease that causes paralysis
and death, and the association estimates that about 5,600
new cases are diagnosed in the U.S. each year.
campaign hasn't exactly put the charity in the same
neighborhood as giants like the American Cancer Society,
the American Heart Association or Susan G. Komen for the
Cure — which raised $889 million, $529 million and $310
million last year, respectively. But it's moving into the
same ZIP code now.
this Saturday, Aug. 23, 2014 file photo, Red Bull
team members dump buckets of ice water on Technical
Chief Adrian Newey, left, and Team Chief Christian
Horner at the Spa-Francorchamps circuit in Belgium
for the "ice bucket challenge" in support
of the ALS Association which is raising funds to
cure Lou Gehrig's Disease. The idea behind the
challenge is to pour a bucket of ice cold water over
oneself and to donate a sum of money to the charity
at the same time, or pay more to avoid doing the
who have been in this space for a long period of time feel
like it's a dream come true," says Munk.
you've been under the proverbial rock, here are the basic
rules: Someone issues a challenge — that you allow
yourself to be doused with a bucket of ice and water, like
winning coaches along the sidelines. Then, the challengee
has 24 hours to make a $100 donation to the ALS
Association or submit to the water torture.
last month, everyone from Microsoft co-founder Bill Gates
to former President George W. Bush has been doused. The
Internet and airwaves are awash in videos of people taking
the challenge — even if they fully intend to write the
Berger, author of the book "Contagious: Why Things
Catch On," says it's like a modern-day chain letter
— except, in this case, everyone will know if you break
has a lot of the key ingredients that often make people
want to share things," says Berger, a marketing
professor at the University of Pennsylvania's Wharton
School. "It gives people lots of social currency to
be part of it. It makes you look good. It makes you look
smart and in the know; you know what's going on. And it's
always hard to back down from a challenge."
others are co-opting the bucket challenge for their own
this photo taken on Tuesday, Aug. 26, 2014, Ten
Pocket iNet corporation employees, from
left,including Terri McMakin, Don Gibbard, weargin
hard hat, and Jake Tegtmeier, right, take the ice
bucket challenge at the Walla Walla Regional Airport
in Walla Walla, Wash.to benefit ALS research. The
water was poured from two lift trucks. Gibbard said
he wore his hard hat to protect from the ice cubes
and took the brunt of dousing because "I was
Matt Damon, for instance, dumped toilet water over his
head to call attention to his passion — safe drinking
water. Actor Orlando Jones of the television series
"Sleepy Hollow" showered himself with bullets in
the wake of black teenager Michael Brown's shooting death
by a white police officer in Ferguson, Missouri.
challenging myself to listen without prejudice, to love
without limits and to reverse the hate," he said.
"So that's my challenge — to me. And, hopefully,
you'll accept this challenge, too."
success for ALS is the kind of thing you can't really
replicate — even if you did it first.
June, about a month before the ice bucket challenge
exploded, University of Arizona woman's basketball coach
Niya Butts took the "cold water challenge."
After being doused with a 10-gallon plastic cooler, Butts
gave her Pac-12 coaching rivals 48 hours to do the same or
donate $250 to the Kay Yow Cancer Fund — named for the
North Carolina State University coach who succumbed to the
disease in 2009. That challenge — #Chillin4Charity —
has raised only about $75,000 so far.
didn't raise millions," Butts told The Associated
Press on Wednesday. "But we raised awareness of
campaign has had more than 80,000 tweets, 100,000 retweets
more than 215 million Twitter reaches, said Susan Donohoe,
the Yow fund's executive director.
Chronicle of Philanthropy says the ALS Association has, in
this short period of time, raised more than many of the
charities included on its Philanthropy 400 list.
now, we're really focused on reaching out to and
acknowledging and thanking the over 2 million donors that
have come to the ALS Association," said Munk, the
association spokeswoman. "And also working to put a
process in place to make the best decisions to spend these
American Institute of Philanthropy's CharityWatch gave the
group a B+ rating for spending about 73 percent of their
cash budget on programs. Analyst Stephanie Kalivas has no
reason to believe that rating will need to be downgraded.
will definitely be keeping an eye out for them," she
says. "Hopefully, they won't be wasteful with
Richard Bedlack, who runs the ALS clinic at the Duke
Institute for Brain Sciences in Durham, North Carolina,
knows how he would allocate the money. While the
temptation might be to plow it all into the search for a
cure, he says the biggest strides have been made in
patient care and quality of life, and that would be his
No. 1 priority.
chances of one of these research studies really finding
meaningful disease-modifying therapy is very small,"
he says. "We're shooting in the dark. So, of course
we've got to keep trying. But the bottom line is we've got
to understand this disease better before we're going to be
able to fix it in most people."