Fad Fundraising and the ALS Ice Bucket Challenge

In 2004, yellow Livestrong wristbands seemed omnipresent in America, making cancer awareness mainstream. In 2010, wide, multicolored wristbands exclaiming “I love boobies!” could be found everywhere from corporations to high schools, using shock value to open a conversation about breast cancer. In 2014, Facebook feeds were flooded with videos of people pouring ice cold water on themselves to encourage others to donate towards amyotrophic lateral sclerosis (ALS) research.

While all of these fads and more were born out of the desire to raise funds or awareness for a specific illness, they quickly became cultural phenomena. As these fads became increasingly popular – the bands became fashion statements and especially creative Ice Bucket Challenge videos went viral – people began to wonder if the larger population had lost sight of the true purpose. Did every child wearing yellow Livestrong bracelets know about the dangers of cancer? Did every celebrity partaking in the ALS Ice Bucket Challenge – eventually known simply as the Ice Bucket Challenge – know what ALS actually stood for?

Instant Advocates?

A young man takes the ALS Ice Bucket Challenge.It’s impossible to know for sure, but given the mass popularity of these trends, it seems unlikely that every person who became involved with the fads simultaneously became advocates for the cause. With so many people seemingly involving themselves with these trends solely to stay up-to-date with the latest crazes, it should be unsurprising that many of these fad fundraisers quickly gained opponents.

Shortly after the Ice Bucket Challenge went viral, many people who were already familiar with ALS raised the question of what the challenge actually had to do with ALS. Truly, it’s difficult to draw a connection between an incurable disease characterized by muscular atrophy and pouring cold water on oneself. Additionally, opponents often pointed towards the rules of the challenge: You either pour water over your head or donate. If millions of people were posting videos of themselves completing the challenge, certainly that meant that not many people were actually donating to the cause.1-2

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Apparently that assumption is far from true. While approximately 17 million people participated in the Ice Bucket Challenge and only 2.5 million actually made donations to the cause, it made a huge difference: The 2014 campaign raised $115 million for the ALS Association.2 For comparison, in 2013, the ALS Association earned a little under $4 million throughout the entire year.3

The massive increase in funding that accompanied the Ice Bucket Challenge definitely wasn’t in vain. Because of the fundraiser, the ALS Association was able to provide a $1 million grant to Project MinE, an initiative in which researchers sequenced the DNA of 15,000 people living with ALS along with 7,500 healthy people.4 Through this initiative, researchers were able to identify a new ALS gene, NEK1, which now ranks among the most common genetic factors associated with ALS.5

While not all of the money raised went towards research, a significant amount did. The ALS Association aimed to distribute the funds into five different “buckets,” including research ($77 million), patient and community services ($23 million), public and professional education ($10 million), fundraising ($3 million) and external processing fees ($2 million).2

Starting a Conversation

Bracelets and pens, intended to raise breast cancer awareness.However, not all popular awareness campaigns end up using the bulk of their funds for research. In 2010, the Keep a Breast Foundation earned nearly $8 million through sales of “I love boobies!” bracelets and other merchandise.6 Of this amount, under $200,000 went towards what were referred to by the foundation as “donations and grants.” About $1.2 million went towards awareness and outreach program expenses, making up the largest percentage (74%) of the foundation’s expenses.7 The amount may seem shocking considering how little (if any) went towards research; however, given the foundation’s mission to empower young people and start a conversation about breast health, the allotment makes sense.8 Many simply assumed that, because the bracelets were intended to raise awareness, they were also used for fundraising.

While opponents of certain awareness campaigns are justified in their skepticism, in most cases, the benefits greatly outweigh the minor annoyances. Of course, many people who participate in these campaigns aren’t necessarily focused on the illness itself. Most people who poured ice water on themselves in 2014 didn’t take the time to donate to the ALS Association. Many of the teenagers adorned in rubber wristbands for cancer awareness didn’t research the purpose of the campaigns prior to purchasing the bracelets. But it doesn’t matter. Regardless of how many people actually donate towards research because of one of these campaigns, it all comes down to the fact that the campaigns get people talking. No, awareness doesn’t always lead to fundraising – but it can still save lives. If ALS research funds gain $10 more because of a viral video, or if one more person decides to get a mammogram after purchasing a pink wristband, it’s worth it.

Sarah Sutherland is a staff writer at ADVANCE. Contact: ssutherland@advanceweb.com.

1. Herrera, J. Why the Ice Bucket Challenge is not good for philanthropy. The Huffington Post. 2014.
2. Bonifield, J. One year later, your ALS Ice Bucket money goes to.. CNN. 2015.
3. ALS Association. The ALS Association 2013 annual report. 2014.
4. Muller, B. Every sequence. ALS Association. 2016.
5. Landers, J. Breaking research news: Ice Bucket donations help identify new ALS gene. ALS Association. 2016.
6. IRS. Form 990: The Keep a Breast Foundation. 2010.
7. Keep a Breast. 2010 annual report. 2010.
8. Keep a Breast. Homepage.

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