My first memory of participating in an awareness campaign was in preschool, 1989. We were doing the "hop-a-thon" for Muscular Dystrophy. We learned that some kids couldn't run and jump like other kids. Our teacher played us music and we hopped a lot. Upon reflection, I'm not sure how the "hop-a-thon" actually raised money for Muscular Dystrophy, but it was fun.
Twenty-five years later, awareness campaigns have changed quite a bit. The ubiquitous Ice Bucket Challenge (IBC) has now raised tens of millions for ALS (also known as Lou Gehrig's disease), a degenerative nerve condition that gradually robs a person of the ability to swallow and breathe. Through the magic of the Internet, people dumping ice water on themselves have generated nearly $90 million for ALS research. Judging from my Facebook feed, it's not bound to stop anytime soon.
While I certainly do not begrudge the funds raised for ALS research -- money is, after all, the only way to develop life-saving treatments through expensive research and trials -- it does raise some questions about awareness campaigns in the digital age. Why do some causes get so much attention and not others? What motivates people to participate in something like this and donate to a condition they may never have heard of before, let alone actually know someone affected by ALS? What does the success of the IBC mean for other nonprofit causes?
For one, there's a lot that's right about IBC. It's shocking, participatory and has celebrity endorsement. The first two features work to boost the IBC's entertainment factor. Dumping a bucket of ice water on one's self is just shocking enough -- after all, isn't that silly? Gracious, that's got to be uncomfortable! But on the other hand, it's not the "Bungee Jump Challenge." It's unpleasant, but ice water generally doesn't provoke the same anxieties as heights, spiders or public speaking.
While there is no IBC police to make sure you donate, the "24-hour rule" puts social pressure on the three people a challenger names in the IBC. In this respect, the campaign has strong reproductive power. The challenge is accepted, and you see it yet again in your Facebook feed. As anyone in advertising will tell you, free and frequent publicity is a good thing. The ALS foundation literally could not pay for this level of attention. Then again, I'm not sure what for-profit company could afford the pervasive coverage that the IBC has generated.
Finally, the IBC scored ultimate brass ring of awareness PR: celebrity endorsement. Not just one celebrity, but a whole metric ton of celebrities. Sports, music, movies, entertainment are all represented -- last time there was this much celebrity support for one cause, it took all the powers of Michael Jackson at the height of his career.
For obvious reasons, the attention that celebrities draw to a cause is gold for any nonprofit. For-profit companies regularly pay millions for celebrity endorsement, and any nonprofit is typically hard-up for the liquid assets necessary to woo the latest stars. But the creativity and the seemingly spontaneous, authentic opportunities offered in the IBC have been particularly unique. And, at times, hilarious.
While the IBC is successful in its professed goal (awareness and funding for ALS), the IBC will probably fail to effect any long-term change. In other words, it's a fantastic example of short-term persuasion -- it works on a shallow level (inline with "slacktivism") and is unlikely to produce a large number of repeat donations. I'd be willing to bet that the same people who happily doused themselves for ALS aren't going to do it again for another awareness campaign. I'd be willing to bet that most of these people are not going to support ALS research in other ways, through volunteering, canvassing or event support. Novelty is fun, and the commitment is low. The sacrifice needed to truly make a difference for a cause is too much work, damn it.
The IBC troubles another question I can't quite answer: What's disease got to do with it? Why ALS and not any other debilitating condition? Typically, it would seem that diseases that affect a larger number of people get greater publicity. According to the CDC, over 209,000 people (men and women) were diagnosed with breast cancer in 2010. Unsurprisingly, the Susan G. Komen Breast Cancer foundation ranks as #12 in the top 100 nonprofit fundraisers. While some people are much more likely to get breast cancer than others, it cuts a wide swath, demographically speaking. It accounts for about 30 percent of the cancer diagnoses in women.
However, prevalence seems to have little to do with awareness, and IBC seems to defy the conventional wisdom that says moving someone to action requires a strong personal connection. I know of only one person who died from ALS about 20 years ago -- an older gentleman from back home. I doubt many people undertaking the IBC personally know someone with ALS, or have even heard of it, and for good reason. The ALS website says that the disease kills approximately two people per 100,000 annually, and only about 5,600 are diagnosed each year. Its rarity makes the attention and funding garnered through the IBC all the more disproportionate and bewildering.
More poignantly, the IBC recalls my own struggle with disease and awareness. When my dad was diagnosed with glioblastoma multiforme in July 2011, I had never heard of it before. I only knew of brain cancer as the plot device used to take out Dr. Mark Greene on ER. I had never seen any PR campaign for brain cancer on the same level as breast cancer, lung disease, or leukemia. I believed this was because brain cancer was rare, often intractable, and almost always fatal, and so raising awareness and generating momentum would be doubly difficult.
But if the IBC taught me anything, it's that awareness needn't be connected to personal relevance whatsoever. Funny things, like fads and celebrity, can generate more attention and money for a cause than those few who are truly passionate and dedicated. And that is certainly not a bad thing. The virulence of any given campaign is dependent on audience buy-in -- just make it fun, easy and creative, and you may just have something that can top the IBC.
So, are you trying to gain support for a nonprofit that's near and dear to you? Can the IBC be co-opted to support brain cancer research, the Humane Society, or the Innocence Project? The bad news is that the IBC cannot be transferred wholesale to any other cause. That card has been played well, but it can only be played once. The good news is that there is plenty of ingenuity, creativity, and spirit to aid other causes that are worthy of just as much money and support.
Personally speaking, I think there needs to be a Trivial Pursuit tournament to benefit brain cancer research.