Members of the ALS community aim to reignite the ice-bucket challenge with an eye to making it an annual fundraising event, while acknowledging it will likely continue on a smaller scale.
Their rallying cry: Every August until a cure.
"A lot of people think it was a one-time shot," said Pat Quinn, who was diagnosed with ALS, or amyotrophic lateral sclerosis, in 2013 and helped catalyze the ice-bucket challenge last year. "But there are a lot of ridiculous things that caught on that are now worldwide movements every year."
As an example, he and others cited Movember — an annual campaign in which men grow mustaches during the month of November to raise money and draw attention to prostate cancer.
To stay true to the organic roots of the ice-bucket challenge, it will be set in motion next month by some of its originators. The ALS Association is to play a supporting role. The nonprofit has redesigned its ice-bucket challenge web page and prepared a series of emails for its donors, among other steps designed to spur on the challenge once again.
ALS Association officials said they have a fundraising goal but declined to make it public. They do not expect to match last year’s $115 million in donations. Still, in the wake of the inaugural ice-bucket challenge, 600,000 new donors requested ongoing communication from the nonprofit, and at the national level its monthly fundraising numbers have be running about $500,000 ahead of pre-ice-bucket challenge levels.
"This will be an interesting time," said Carrie Martin Munk, chief communications and marketing officer for the ALS Association. "We know some people give donations once a year. Some of these people could be once-a-year ice-bucket donors."
Internet Rocket Fuel
The ice-bucket challenge has its own chapter in the annals of nonprofit fundraising, and it goes like this: In July 2014, people activated a grass-roots social-media campaign to generate attention and donations for ALS, also referred to as Lou Gehrig’s Disease. Mr. Quinn, 32, and 30-year-old Pete Frates, who also has ALS, were among the first to rope in family members, friends, colleagues, and neighbors.
In the challenge, participants were prompted to douse themselves with buckets of ice water or donate to the ALS Association, one of a number of ALS-dedicated groups. Many chose to do both. The soakings were captured on video and then uploaded to Facebook and Instagram with challenges to three new participants.
The water may have been icy, but the videos proved to be Internet rocket fuel. By August, the ice-bucket challenge was tearing through social-media feeds, stoked by celebrities, professional athletes, business leaders, and politicians.
The ALS Association, which had welcomed a new CEO just months earlier, found itself the beneficiary of a viral nonprofit fundraising campaign with no precedent. Organization officials fielded a wave of media attention. They began releasing regular fundraising tallies, which further stoked excitement and participation, said Ms. Munk of the ALS Association.
Pre-ice-bucket challenge, the nonprofit had a $20 million operating budget. At the peak of the campaign, in August, it received $11.5 million in donations in 24 hours. By the time the water stopped flying, the public had donated $220 million worldwide to the cause, a little more than half to the ALS Association.
The ALS Association gained 2.5 million in new donors, and 600,000 requested to be added to the nonprofit’s standing donor list.
The ice-bucket challenge, as it occurred in 2014, probably was a one-time phenomenon, many experts say. June Bradham, chairman of the fundraising consulting firm CorporateDevelopMint, said that part of the magic was that it was set in motion not by an organization but by caring individuals. The ALS Association does have a "great opportunity to build deeper relationships with those who participated and their contacts," she said.
Fundraising consultant Edith Falk said that the publicity generated by the ice-bucket challenge reminded her of a 1999 publicity stunt by the City of Chicago called Cows on Parade, in which 300 ornately decorated, life-size cows were installed around the city and then later auctioned off. It was a huge hit, and there were attempts to repeat it in Chicago and other cities in subsequent years. But it never generated anywhere near the interest and excitement of the first event, she said.
"Certainly the ALS Association might consider some variation of this — a different, fun, creative event that lends itself well to going viral, but even that is unlikely to generate the amazing level of attention and support that the ice-bucket challenge did," Ms. Falk said.
While it is unlikely that the campaign will capture the same attention that it did in 2014, it could still represent a significant fundraising and public-education event, said fundraising consultant Roger Craver. The building process starts with setting reasonable expectations.
"If the founding folks don’t get too hyperbolic and promise a mirror-image repeat of last year, they may well make this the year when the ice-bucket challenge starts down the path of coming a tradition," he said.
On Wednesday, the ALS Association and the ALS Finding a Cure Foundation said they would spend $3 million on ALS-related clinical studies. It follows the $21.7 million in ice-bucket-related-spending announced by the ALS Association in October. The bulk of that sum, $18.5 million, is supporting four research projects.
The organization also increased spending on direct services, provided via a network of 43 treatment centers, to $25,000 per center for the next three years. Previously, the funding was $12,500 per center.
The balance of the initial outlay is earmarked for policy work in Washington.
It can cost as much as $2 billion to move a drug through research and development and into the market, said Lance Slaughter, chief chapter-relations and development officer at the ALS Association.
"What that means is we would need 10 to 20 ice-bucket challenges to actually deliver on the promise of what was launched last summer," Mr. Slaughter said.
And as impressive as the estimated 5 million participants were, there are many more to be stirred to action, he said.
"There are 295 million people in this country who didn’t take the ice-bucket challenge," Mr. Slaughter said. "We are going after those people. "
While the 2014 campaign was extraordinary, little has changed, say ALS Association officials. There is no treatment for ALS, much less a cure.
"It is such a difficult disease to break down and study," said Mr. Quinn. "Really, what happened last year was just a start."