ALS Ice Bucket Challenge: a charity campaign that spread through its own donors

The situation

In the summer of 2014 a charity that most people outside the United States had never heard of received, in a few weeks, far more money than it normally raised in a year. The ALS Association, which funds research into amyotrophic lateral sclerosis, reported $100.9 million in donations between 29 July and 29 August, against $2.8 million in the same period a year earlier and $64 million for the whole of 2013. These are the figures given by the Boston College Chronicle in September 2014. By the end of the summer the association had received $115 million, according to a 2017 review in Nature, about half of an estimated $220 million raised worldwide.

None of this came from a campaign the charity designed. It came from people pouring buckets of ice water over their heads, filming it, and nominating friends to do the same or to donate. Nature reports more than 17 million participants and more than 28 million donors, with the videos watched over ten billion times. The charity’s problem was unusual: it had to decide how to spend a windfall that it had not planned for, from donors who had given because of a game, in a moment that everyone expected to pass.

This case looks at how the challenge spread, what the ALS Association and a comparable charity in the United Kingdom did with the money and the attention, and how far the evidence supports the praise and the criticism that followed.

Background

The disease and the charity

ALS, also called Lou Gehrig’s disease or motor neurone disease, is a neurodegenerative disorder. The ESSEC business school’s knowledge site describes it as a disease where most patients die of respiratory failure within five years and there is no known cure. The Boston College Chronicle estimated about 30,000 Americans have it at any one time. It is rare, which shapes its fundraising: few families are directly affected, and public awareness has historically been low.

The ALS Association is the largest US funder of ALS research after the federal government, according to Nature. Before the challenge it spent about $6 million a year on research. In the United Kingdom the equivalent body is the Motor Neurone Disease Association, set up in 1979 by people affected by the disease, according to the trade publication Civil Society. Nature names the ALS Society of Canada as another major recipient.

Where the challenge came from

The sources agree that the Ice Bucket Challenge was not invented by the ALS Association or by one person. The Boston College Chronicle notes that Pete Frates, a former Boston College baseball captain who was diagnosed with ALS in 2012 at the age of 27, did not invent it but helped popularise it. It cites a Slate writer, Josh Levin, who traced the challenge to several earlier charity efforts and to traditions such as the polar bear plunge.

The link to ALS came through a golfer, Chris Kennedy. The Boston College piece says he took the icy shower on 14 July and was the first to tie it to ALS. Time’s 2020 obituary of Pat Quinn gives the connection: Kennedy challenged his wife’s cousin, Jeanette Senerchia, whose husband had ALS, to pour a bucket of ice water over her head, post a video, and nominate others or donate. Quinn, a Yonkers native who had been diagnosed with ALS, saw the challenge on Kennedy’s social media. He took it up, and Frates took it through Quinn. The date of Kennedy’s first challenge is given as 14 July by Boston College; the Time obituary says only 2014, so the exact start is not fixed here.

How the charity raised money before

The figures above show the usual rhythm. In 2013 the ALS Association received about $64 million over the whole year, according to Boston College, and about $2.5 million in the comparable summer weeks, according to ESSEC (Boston College gives $2.8 million for a slightly different date range). Public research funding was the other large source. The National Institutes of Health was estimated by Nature to spend $39 million on ALS in 2013 and $55 million in 2017.

The industry

ESSEC’s article, written in September 2014, noted the argument that ALS is not among the top 20 fatal diseases worldwide and is already relatively well funded compared with other causes. That claim is the author’s summary of a critique, not an established ranking, but it shows what the debate looked like.

A second feature of the sector is the speed at which online giving can move. The Ice Bucket Challenge arrived in an environment where social media sharing, short video and celebrity participation were normal. Nature lists participants including Bill Gates, Oprah Winfrey and Homer Simpson, and Time’s 2016 piece names LeBron James and Bill Gates. Time’s 2020 obituary adds Donald Trump before his election. The mix of well-known names with ordinary participants meant nominations kept moving.

The research side has its own economics. Nature reports that whole-genome sequencing cost about $2,000 per person in 2014 and that the Project MinE initiative, which aimed to sequence DNA from tens of thousands of people with and without ALS, needed about $45 million for 22,500 sequences before equipment and analysis. A gene-hunting project of that kind is expensive and needs many donors and countries. Small, steady grants rarely paid for it.

In the United Kingdom, Civil Society reports that the Motor Neurone Disease Association spent 70 pence in every pound on core activities, a figure it used when media attention turned to how much money reached the work.

The decision

The charities did not choose the Ice Bucket Challenge; it chose them. The decisions in front of them were about what to do once it was happening. The sources do not describe formal option papers, so the alternatives below are framed as the obvious ones, with evidence for what each charity chose.

Option one: claim and manage the campaign

A charity could have tried to take ownership of the challenge, set rules for it, and steer every participant to its own donation page. The Motor Neurone Disease Association chose the opposite. Civil Society reports that it did not claim ownership of the challenge and argued that more money in the sector benefits everyone. Its finance director, Linda Cherrington, described the surge as reacting to a lightning strike that no one could have predicted or controlled.

Option two: follow the surge

The other option was to adapt plans quickly. The MND Association had a September campaign with a target of 40,000 pounds for research. When the challenge took off it changed those plans, and staff were empowered to make decisions fast, Civil Society says. It expected the attention to fade, so it tried to make the most of the period while it lasted.

Option three: how to spend a windfall

For the ALS Association the central decision was what to do with $115 million. It could spend quickly on research, hold part as reserves, or put money into patient services and public awareness. Time reported in 2016 that $77 million of the $115 million had gone to research. Nature adds that other funded work included new stem-cell models, a better understanding of disease-related proteins, and grants for advocacy and patient care. The sources do not give a full breakdown, and the ALS Association’s own results page could not be opened, so the split between categories is not available here.

What they did

July and August 2014: the spread

In the weeks after 14 July the challenge moved from a few friends to a mass activity. Boston College reports that from 29 July to 25 August its own official Facebook and Twitter accounts received 17.2 million impressions, with more than 6.5 million on Facebook on 7 August alone. Frates challenged his Facebook network, which included the New England Patriots players Tom Brady and Julian Edelman and the Red Sox owner John Henry. His father, John Frates, told the Chronicle that something miraculous was happening, and said that the face of ALS was a handsome, young, charismatic, former Division 1 baseball player.

ESSEC reports that the average donation was about $40, and Nature says most donors gave small amounts.

In the UK: a lightning strike

Civil Society reports that two volunteers from West Yorkshire branches set up an early fundraising page with a target of 500 pounds. Over the August bank holiday weekend the charity’s total rose from 60,000 pounds to 1 million pounds. By mid-November 2014 it had received 7.1 million pounds from the challenge, from 900,000 donations, with 85,000 new supporters giving their details and 533 new direct debits. A video by the actor Benedict Cumberbatch was viewed more than five million times. Nature adds that the charity’s website traffic rose from a daily average of about 1,400 to 153,000 in a day.

Late 2014: turning attention into research

Funding for Project MinE was announced in October 2014, according to Time. The project was the idea of Bernard Muller, an entrepreneur living with ALS, who said the challenge enabled the group to secure funding from new sources in new parts of the world. Nature adds that researchers led by John Landers had asked the ALS Association for $1 million in spring 2014 to join the project, before the challenge began.

2015 to 2016: results

In July 2016 the ALS Association announced that the project had identified a new ALS gene, NEK1. Good Morning America reports that researchers in 11 countries studied 1,000 families with ALS, then analysed 13,000 people with ALS and no family history and found variants in the same gene; the findings were described as preliminary at the time. Nature later says a 2016 paper reported that NEK1 variants explain about 3 per cent of ALS cases. Philip Wong’s team at Johns Hopkins used challenge funding to pay for RNA sequencing and a graduate student, and a 2015 paper described how clumping of the protein TDP-43 leads to cell death. In 2016 the ALS Association launched a campaign called Every Drop Adds Up.

What happened

Money and research

Nature reports that the ALS Association’s annual research spending went from about $6 million before the challenge to an average of about $19 million after it, with $71.5 million of the challenge money spent by the time of the review in 2017. The same article says the National Institutes of Health was estimated to spend $55 million on ALS in 2017, up from $39 million in 2013. The sources do not say how much of the NIH increase was caused by the challenge. The ALS Association said in 2020 that the challenge led to new research, expanded care and significant government investment, which is its own account.

Awareness

Nature reports that the ALS Association’s website visits rose from about 20,000 a day to 4.5 million at the peak. Google searches and Twitter mentions of ALS spiked, the same article says. Awareness was the second product of the campaign, alongside money.

The fade

The surge did not last. Nature reports that by September 2014 donations had fallen close to pre-challenge levels, and that later attempts to repeat the campaign did not come near the original. Sander van der Linden of the University of Cambridge told Nature that viral campaigns tend to fade, especially when they are driven by social pressure and not personal values. His 2017 study compared the challenge with two other online campaigns, Save Darfur and a 2012 Facebook organ-donor drive, and contrasted it with Movember, which brings smaller but steadier donations because it builds a shared identity.

Other views

The slacktivism critique

Critics called the challenge slacktivism: a feel-good behaviour that costs little and does little. ESSEC listed several concerns in September 2014. Many donors may not have researched the charity. Most challengers were first-time donors unlikely to stay involved. It was unclear whether the challenge replaced a donation or added to one. The author also noted that proving that donations were diverted from other causes is difficult. Nature adds that some critics argued the money pulled attention from heart disease and the West African Ebola outbreak, and that others complained about water waste in a drought year. Nature also says some analyses suggest the campaign did not draw money away from other causes.

Evidence about the videos

Nature cites an analysis by RJMetrics of 1,500 videos. It found that 26 per cent did not mention ALS, and of those only 5 per cent led to a donation. Among videos that did mention ALS, 25 per cent led to donations. The figures come from a sample of videos rather than all of them, so they indicate a pattern rather than a total.

Charities facing a spike

Civil Society reports that the UK charity expected media attention to turn negative, and it did, with criticism about research and questions about how much money reached core work. The charity pointed critics to its annual accounts and stayed neutral on donors’ choice of cause. It also ran press advertisements featuring people living with MND to tie the fundraising to the cause.

Supporters

The ESSEC author concluded that the bucket looked half full: the challenge was fun, relied on social ties, and might turn first-time givers into longer-term supporters. John Landers told Nature he did not see how anyone could criticise money donated to such a disease. Pat Quinn wrote that the challenge was the beginning of ending ALS. The ALS Association’s chief scientist, Lucie Bruijn, said the NEK1 discovery highlighted the value of big data in ALS research.

Reading it through a framework

Stakeholder mapping

Mapping the people involved shows why the campaign worked and why it faded. The participants, a large crowd with modest interest in ALS, gave for social reasons and in small amounts, with an average gift of about $40. The people with the disease and their families, including Frates and Quinn, were a small group with high interest and, in this case, high visibility. The charities held the money but little control over the campaign. Researchers such as Landers and Wong were the end users of the funds. Critics and commentators acted as a check. Funders such as the NIH were outside the campaign but were affected by it, since public awareness can influence public budgets.

The map shows an imbalance. The group with the greatest power over the money, the crowd of donors, had the least stake in the long-term outcome. The group with the greatest stake, patients and researchers, had the least control. That helps explain why van der Linden saw a campaign driven by social pressure as likely to fade, and why the charities worked quickly while it lasted.

AIDA

The AIDA model describes a buyer moving from attention to interest, desire and action. The challenge compressed the first and last steps. Attention came from a visible, repeated, shareable video. Action, an ice bucket or a donation, followed in seconds. The weak steps were interest and desire. RJMetrics found that videos that did not mention ALS rarely led to donations. The evidence in Nature that most challengers were first-time donors unlikely to return suggests that desire for the cause, as opposed to desire to take part, was thin in many cases. The charities’ task was to build the middle steps after the fact, which is what the MND Association’s press advertisements with people living with the disease tried to do.

Since then

The research that the money paid for continued. Time reported in 2016 that NEK1 gave researchers a potential target for therapies, and Nature in 2017 reported that Landers’ group was writing about another ALS gene. Pete Frates died in December 2019 aged 34, and Pat Quinn died in November 2020 at 37, according to Time. The ALS Association said at that time that the challenge had raised more than $200 million worldwide, and it called it the greatest social media campaign in history. That is the charity’s own description.

The sources opened for this case do not cover the association’s finances, research results or fundraising after 2020, so later years are not covered here.

What to take from it

• A campaign that spreads through its supporters can raise more in weeks than an organisation normally raises in a year, as the ALS Association’s $100.9 million against $2.8 million showed, but the organisation does not control it.
• Small gifts from first-time donors can add up to large sums, yet the evidence suggests many of those donors do not return, so the follow-up matters as much as the spike.
• Charities that respond fast and without claiming ownership can use a surge well, as the MND Association did when it changed its September plan and recorded 7.1 million pounds.
• Research funding moves through projects with their own cost structure, and money from a windfall can pay for work that ordinary budgets could not, such as the gene sequencing behind the NEK1 finding.
• Claims about impact should be checked against what the sources can show: the figures for money raised are firm, while claims about cause and effect on later government spending are the charity’s own.

Questions to think about

1. If a charity cannot control a viral campaign, what should it prepare in advance so that it can act quickly when one arrives?
2. Does it matter that many participants joined for social reasons and not because they cared about ALS, if the money still reached research?
3. How would you test the claim that the challenge did not draw money away from other charities, given the difficulty ESSEC describes?
4. What would a repeatable version of this campaign need, in the light of the comparison with Movember?

Concepts at work

Three ideas run through this case: viral marketing, slacktivism and stakeholder mapping. Explore them in Insights.

Written from the public sources listed below. Figures are as those sources report them.