A lot of things changed for the ALS Association (ALSA) after last summer’s Ice Bucket Challenge (IBC) became a viral and fundraising sensation. The organization’s recent donor file suddenly quadrupled, going from 1 million active donors to 4 million — a problem any nonprofit would like. But at the same time, the demographics of its file changed dramatically.
Pre-Ice Bucket Challenge, the largest segment of donors to ALSA was 45 to 64 years old and had a high affinity and most likely a personal connection to the disease. Only months later, the largest segment of its donors were 18- to 34-year-olds with a much lower affinity, perhaps not even fully understanding the disease or how it impacts people. “We were trying to raise resources for a disease that most people didn’t understand,” before the challenge, said Lance Slaughter, chief chapter relations and development officer at the Washington, D.C.-based national office.
While only 600,000 of the roughly 3 million new donors gave the organization explicit permission to communicate again, ALSA is still treating them like those who did not participate last year. “The role we see ourselves playing is not making that appeal but making it worth it,” Slaughter said. A nonprofit typically would steward donors up the ladder, eventually into a mid-level donor or major donor. But ALSA hasn’t had the benefit of as much time to develop the relationship. “We don’t know enough about them yet.
One of the issues is, there is still so much to be done, we never went through the process of stewardship and solicitation with these donors. They are much more accountable to the person who challenged them than they are to us,” Slaughter said. “Typically, you have a pretty good understanding of who those donors are – we don’t,” he said. ALS stands for amyotrophic lateral sclerosis and also is known as Lou Gehrig’s disease. The former New York Yankees slugger suffered from ALS and before the Ice Bucket Challenge was the most iconic figure associated with the disease, largely because of his famous “Luckiest Man” speech, delivered at Yankee Stadium on July 4, 1939. The Ice Bucket Challenge was about engagement, challenging friends and family.
There were so many degrees of separation from the original challenge yet ALSA needed to create a donor program for people who have little information about the disease, according to Carrie Martin Munk, chief communications and marketing officer at the ALS Association. “We had to tread a fine line. We didn’t want to appear too opportunistic,” Munk said. ALSA embraced the campaign and responded to the public interest. “People were coming to us for information and ALS has a responsibility to provide it. We never once asked for money but made it easy to donate,” she said. An early email thanked donors for their contribution and over a six-week period, ALSA thanked them and surveyed them but did not ask for money, instead giving some information about the cause and asking how they’d like communicate and engage with the organization. This year,
ALSA is ramping up for the challenge again, with infographics and how-to videos to participate in the challenge. “If we decided it was going to be a one-hit wonder, we would’ve been vilified by that community. They will drive it. Our role, in partnership with other ALS organizations, is to amplify their voice, in collaboration with other organizations. We don’t feel this is about the ALS Association,” Munk said. “We want to speak much more digitally, not just words over and over, but visually,” she said. Social media was a platform that took the challenge to “unfathomable heights” while it was traditional media and channels that kept it going. “What we’ve done a lot of this year is coordinate not only with other ALS colleagues in the U.S. but internationally as well, sharing tools and resources,” she said. ALS Association has redesigned the landing page for the Ice Bucket Challenge on its website, created a video and an infographic about “how to” do the challenge, and share with friends.
It also has compiled information about how the $115 million in contributions from last summer will be spent: • 67 percent, $77 million on research; • 20 percent, $23 million on patient and community services; • 9 percent, $10 million on education; • 2 percent, $3 million on fundraising; and, • 2 percent, $2 million on external processing fees. The ALS Association’s website is still positioned to educate and inform. “Last summer, people were coming to the website to help us. Part of what we need to do is create opportunity, put a megaphone on the community that started it. It’s their role, intention and aspiration to keep this going,” she said. More than 17 million people uploaded their IBC videos to Facebook, which were watched by 440 million people a total of 10 billion times.
ALSA has essentially tripled its research budget from $7 million to $21 million, and doubled its operating budget, from $20 million to $40 million. Prior to last summer, the IBC was known as a golf stunt and used used by other causes. Professional golfer Chris Kennedy challenged his sister, Jeannette Senerchia, whose husband Anthon has ALS. Through Facebook, one of her friends connected to Pat Quinn of Yonkers, N.Y., who was connected to Pete Frates in Boston, Mass. Both Quinn and Frates are battling ALS and the challenge spread across their social networks well beyond the Northeast. Munk remembers being at an off-site meeting planning for year-end when about 200 people did the challenge in Boston’s Copley Square.
ALS Association saw a lift of about $135,000 that day compared to the previous year; about 10 times the contributions of a typical August day. By the end of the week, the phones were ringing from media requests as well as people who wanted to do the challenge. With her experience in the communications department at American Red Cross, Munk said the closest comparison to the Ice Bucket Challenge was the public relations response to a natural disaster, with intense media attention, public interest and an unprecedented level of giving. “It required a textbook communications response,” she said. During her time at Red Cross, Munk was involved in the response to the 2004 hurricanes, the 2004 Asian tsunami, Hurricane Katrina in 2005, an the response to the Sept. 11, 2001 terrorist attacks.
Prior to the Ice Bucket Challenge, ALSA’s website typically had about 20,000 unique visitors each month. During the height of the challenge, that number was 4.5 million. While there was a hefty Web bill for the huge increase in users, ALSA was able to scale up with relatively no issues, Slaughter said. Having raised $60 million one week, it would have been disastrous if infrastructure had failed. “I’m most proud of that,” he said. There are organizations that never would have “pivoted” the resources like ALSA did or given it any attention because it didn’t fit into their priorities for that year. “It didn’t fit in our priorities but in the priorities of the people we serve, therefore it was imperative that we do it,” Slaughter said. For that reason,
ALSA continues to carry the torch for the Ice Bucket Challenge. If ALSA did nothing, all of the money raised through the Ice Bucket Challenge would run out in four to five years, Slaughter said. The challenge took ALS Association and its 39 affiliates from about $66 million collectively to a $125 million organization, and should put $50 million to $70 million into the field. There’s also a need to ensure enhanced quality of care and accelerate keeping people alive with a high quality of life so that they are healthy enough to participate in research, Slaughter said. Quinn said the Ice Bucket Challenge has to be done every summer until there’s a cure, according to Munk. Will it raise another $220 million? “We’ll see. We’re looking forward to it and remain optimistic,” she said, but there isn’t a specific fundraising goal this year. “It’s all about transforming a moment into a movement.”
Success is not just in financial terms, said Slaughter, but people will measure the financial results of any subsequent Ice Bucket Challenge against 2014. “If nothing else, “if we continue to engage, offer information about the progress we’re making, in that regard, in my view it’s a success.” As wonderful as $100 million is, it does not address some challenges, Slaughter said. For one, the cost of living with ALS is about $250,000 a year. None of those fundamentals has changed, he said. How it all unfolded was another unplanned challenge that was less about addressing contributions than what the organization is going do about it in the framework of a cause. ALS remains a disease with no known cause or cure and it takes $2 billion to take a drug to market in the United States — more than 10 times what the Ice Bucket Challenge raised. “What we celebrated was the launch of what the real work is going to be and a new era of it; Celebrating the fact that it’s been a real privilege to serve in this case. For a nonprofit professional, this is what you hope to be at, the epicenter of what we hope is transformational change.” NPT