By Doyin Agbaje and Hannah Lind, 2022
The ALS Association is a US-based non-profit organization whose focus is on funding the advancement of global research into Amyotrophic Lateral Sclerosis, a debilitating and life-ending disease (ALS Association, n.d.). The organization’s aim is to discover effective treatments and, ultimately, a cure. Alongside this, a large portion of their funding goes directly towards patient care and services (ALS Association, 2021). In 2014, the ALS Association experienced one of the most sensational non-profit fundraising successes in history: the ALS Ice Bucket Challenge.
Pat Quinn, Anthony Senerchia and Pete Frates—three men who were living with ALS—were credited as co-founders of the original campaign (Associated Press, 2020), which invited people to dump a bucket of ice water on themselves to briefly simulate the physical sensation of numbness and loss of body control that comes with ALS. Along with dumping the bucket of water on themselves, participants were urged to film this action, post the video online, and challenge others to participate—and to donate to the ALS Association.
Unwittingly, these three men launched a fundraising campaign that went viral across social media and ended up raising over $100 million (ALS Association, 2019).
The Ice Bucket Challenge was originally intended to raise awareness and understanding of ALS and to encourage people to make donations to the Association (Sifferlin, 2014). The target audience was first-hand social connections to the original participants who had a personal interest in the cause and could then spread the message across their networks.
By the time the national headquarters of the ALS Association became looped into the growing trend through a local chapter representative, the social media reach was growing exponentially and the primary goal appeared to shift to simply maximizing financial donations.
Key Actors and Actions
Beyond Quinn, Senerchia, and Frates—whose presence was also later important to help discount criticisms that such a campaign made light of such a serious condition—many others became important figures in the campaign.
Carrie Munk—chief communications and marketing officer for the ALS Association—played a key role in managing the viral response and her background in crisis communications proved crucial in maintaining strong internal and external messaging throughout the campaign (Nichols, 2015). This involved counteracting misinformation and providing transparent financial information.
As the campaign’s two-step model grew and built wider engagement, key actors included notable participants, such as Bill Gates, Oprah Winfrey, LeBron James, and George W. Bush (Steel, 2014). The first media attention for the campaign came from NBC News personality Matt Lauer being nominated (Trejos, 2017).
Engaging Hollywood proved a huge success. Many participants likely joined in after seeing their favourite celebrity taking the Ice Bucket Challenge. Although instigated by people who had ALS, the campaign became viral when celebrities were nominated. This was the reason for its worldwide circulation.
Transparency instilled confidence in participants and the media. The organization was transparent in the presentation of donations received and how it was used for research efforts (ALS Association, 2019). This had the effect of increasing credibility and a sense of trust.
The key message of the campaign was: “You should donate to this cause because you might help to find a cure for a serious disease and you’ll have fun while doing it.” The message was encoded by promoting an engaging activity that encouraged people to participate, nominate others, and donate. The message was disseminated through social media, predominantly Facebook, Youtube, and Instagram. As people experienced the Ice Bucket Challenge, the message proved true and their enthusiasm to spread the message was self-replicating.
The challenge spread like wildfire; about 71 million people participated worldwide (Trejos, 2017). The ALS Association raised $115 million USD (ALS Association, 2019). The money was committed to research and led to breakthroughs: a handful of genes associated with ALS were discovered (2019).
Although the organization successfully raised millions, the main original cause of the challenge was neglected. The challenge (and hashtags) shifted from the ALS Ice Bucket Challenge to the Ice Bucket Challenge. Many individuals who participated, including the authors of this case study, were unaware of what ALS was and what the donations were for. The challenge became a generic trend on social media and many celebrities failed to mention anything about donating in their posts (Wenn.com, 2014). Although the ALS Association experienced a spike in searches about the condition at the time, in comparison to the millions of participants worldwide, the ratio demonstrates a lack of engagement from most participants. Despite the worldwide participation in the challenge, many donations went to other charities (Townsend, 2014). The outcome was that the goal of creating awareness was hindered and seemingly a small percentage of people actually donated, albeit eventually aggregating into a huge sum (Steel, 2014).
Likewise, the challenge was short-lived. It only lasted a few weeks, as people quickly forgot the cause (Trejos, 2017). If the goal was to create long-term awareness about the disease, this was impeded. The ALS Association tried to make the challenge an annual tradition, but could not replicate the traction of the original campaign.
Despite these negatives, the campaign was incredibly successful in terms of popularity and financial gain. This case suggests that social media may provide a temporary boost in visibility and funding, but those effects can be ephemeral and short-lived.
Learning for PR Practitioners
The ALS Association itself acknowledged that the success of the campaign was “lightning in a bottle” (Ruiz, 2017). However, there were features to its popularity that PR practitioners may be able to replicate:
- The national ALS Association responded positively to the grassroots activity from people who were their direct stakeholders. This fostered credence and credibility with the audience and neutralized claims that the campaign was frivolous. This also serves as a reminder that national umbrella organizations need diligent and regular media monitoring so that they are closely following the activities and campaigns of local chapters.
- The campaign made participation emotionally rewarding. Some of the audience’s motivation was completely different to those of the originators and the ALS Association—in this case, simply having fun with minimal knowledge of the cause—but capturing that enthusiasm nonetheless paid off for everyone.
- When launching a campaign, organizations should find a quiet point in the news cycle or look for a time when media audiences are in need of a “feel good” story (Ruiz, 2017).
Going viral can be a double-edged sword. If the goal is to achieve a temporary boost in funding or promoting an activity, virality could be worth pursuing. However, the potential benefits must be weighed against factors such as the investment of necessary time and energy to control the message and deal with any unintended consequences. The ALS Association, for example, had to restructure their organization to manage a hugely scaled-up budget, while still providing transparent information to donors about how donations were spent (Nichols, 2015).
ALS Association. (n.d.). About us. https://www.als.org/about-us
ALS Association. (2019). Ice bucket challenge dramatically accelerated the fight against ALS. https://www.als.org/stories-news/ice-bucket-challenge-dramatically-accelerated-fight-against-als
ALS Association. (2021). Financial statements: Years ended January 31, 2021 and 2020. https://www.als.org/sites/default/files/2021-07/ALSA_1.31.21%20FS.pdf
Associated Press. (2020). Co-founder of viral ALS ice bucket challenge dies at 37. https://www.terracestandard.com/news/co-founder-of-viral-als-ice-bucket-challenge-dies-at-37/
Nichols, L. (2015). Comms team goes all hands on deck amid ALS fundraising phenomenon. PRWeek. https://www.prweek.com/article/1354290/comms-team-goes-hands-deck-amid-als-fundraising-phenomenon
Ruiz, R. (2017). The secret sauce that makes charity campaigns go viral. Mashable. https://mashable.com/article/how-charity-campaigns-go-viral#86Ilc2XtlmqQ
Sifferlin, A. (2014). Here’s how the ALS ice bucket challenge actually started. Time. https://time.com/3136507/als-ice-bucket-challenge-started/
Steel, E. (2014). Ice bucket challenge has raised millions for ALS Association. New York Times. https://www.nytimes.com/2014/08/18/business/ice-bucket-challenge-has-raised-millions-for-als-association.html?_r=2
Townsend, L. (2014). How much has the ice bucket challenge achieved? BBC News. https://www.bbc.com/news/magazine-29013707
Trejos, A. (2017). Ice bucket challenge: 5 things you should know. USA Today. https://www.usatoday.com/story/news/2017/07/03/ice-bucket-challenge-5-things-you-should-know/448006001/
Wenn.com. (2014). Steve-O takes aim at stars over ice bucket challenge. https://web.archive.org/web/20140820224752/http:/entertainment.ca.msn.com/celebs/steve-o-takes-aim-at-stars-over-ice-bucket-challenge-1