No, I haven’t poured a bucket of ice water over my head and posted an online video of myself doing so on my social media accounts for you all to scrutinize. There are several logistical challenges involves (no ice, no ice bucket, the need to recruit someone to do the video, etc, etc) but I decided that I just preferred to sit down and write a check to the ALS Association after a high school classmate challenged all 380-plus members of our alumni association to take the #IceBucketChallenge in honor of one of our own, Gae Engerski Skager, diagnosed with the disease about a decade ago. There is no cure, and very few treatments beyond those to alleviate the symptoms as the body’s motor neurons stop firing, shutting down the muscles governing everything from walking to breathing. ALS is a nasty disease that has already claimed the life of a close family friend. And yet, shamefully, the ALS Association wasn’t on my radar screen as part of my regular charitable giving. Nor, it seems, was it attracting much love from other donors. In part, that’s because of the good news – ALS is classified as an “orphan disease”, since fewer than 200,000 people get the diagnosis annually. The bad news? For those that do, it’s a death sentence – usually within two to five years. But there’s a link between those small numbers and the absence of any treatment: ALS just hasn’t been as profitable a target for pharmaceutical companies to invest millions of dollars in as, say, new cancer drugs. Fair enough, but as one physician testified to Congress back in 2009, that means it’s not an incurable disease, just an underfunded one. Which brings us back to the Ice Bucket Challenge, now sweeping the social media world. The idea is simple: dump a bucket of cold ice water on your head, and post a video of yourself doing to Facebook, Twitter, etc. – and tag three (or six, or 300) of your closest friends to do likewise, or fork over a donation to the ALS charity of their choice. Ethel Kennedy did it, and tagged Barack Obama. Martha Stewart did it, and tagged Gwyneth Paltrow. Half of the pro sports teams have participated, most of the major media figures, and Facebook CEO Mark Zuckerberg. Between 29 July and 12 August, the ALS Association has seen donations quadruple from year-ago levels, hitting $4m. Over the same period, they have received gifts from 70,000 new donors – people they will try to transform into regular givers. Clearly, the shift from more sober fund-raising approaches – sponsored walks, mailings, and all that – to something, err … splashier is paying off. And yet, the spectacle of people gleefully spending the last months of summer publicly dumping buckets of ice water over their heads, posting videos of the same and chattering about ALS online seems to have triggered a Grinch-style backlash. Ice-bucket challengers are nothing but slacktivists, it is alleged, using the stunt as a way to feel good about themselves and giving themselves an excuse not to write a check to this cause – or any other – but still feel virtuous. Not so fast … Clearly, many of those folks – including at least half a dozen I spoke to personally who gleefully dumped water over their heads – did also donate. But let’s walk through some of the criticism, anyway, because we hear it every time someone tries to start a popular movement to raise money for a charity. “What if all the thousands of people who spent money on buying ice and dumping water over their heads just gave the money to ALS quietly instead?” Well, yes, that would be lovely, wouldn’t it? The ALS Association has been around since 1985, sitting there and waiting for people to send it the money; sports celebs have promoted the cause. Alas for our society: as you can see by the booming donation numbers, we’re programmed to respond to just this kind of stunt. Will it last? Will those donors stick around? Well, that’s a conundrum that every non-profit confronts. The Asian tsunami and Hurricane Katrina produced waves of giving for relief organizations, who then battle to hold on to the donors and the dollars. The ALS Association will have to be smart in their follow up marketing in the coming months. And yet one more objection: ALS is incurable – will it have an impact? Shouldn’t I give my money where I can make a real difference to someone’s life, by donating to a food pantry, buying a mosquito net or helping provide clean water for a community in need? Well, the fact is that the world is awash in worthy causes that clamoring for our attention – and our support. Only you can decide which ones you want to underwrite financially and no, you shouldn’t be seduced by a media campaign. On the other hand, had people viewed AIDS in this way back in the 1980s, we wouldn’t have the antiviral drugs that make an HIV positive diagnosis something to managed and lived with rather than a short-term death sentence today. Perhaps most disconcerting of all is the huffy comment that the ALS campaign is taking funds away from other non-profit organizations. Well, possibly. And so? To the extent that the ALS Association has finally found a way to transform a vague awareness of the disease into something viral, and turn it into a source of funds, good for them. No one fussed too much when pink ribbons and yellow wristbands started multiplying. A once-obscure organization has become surprisingly effective at fundraising and will be able to do much, much more for its beneficiaries. If all non-profits become more creative, maybe it will inspire more of us to ramp up our giving. There are some ways in which the challenge could have been better structured. It should have been made explicit, for instance, that even those dumping the ice-water over their heads weren’t exempt from making at least a smaller, token donation to an ALS cause. And every participant should have referred to ALS to drum up more recognition. Meanwhile, those whose attention has been seized by the stunt – or who find their attention drawn by any charitable organization with which they’re unfamiliar – need to do their due diligence and not just get swept up in the excitement. I’ll leave the last words on the subject to Gae Skager, the friend in whose honor I did not dump a bucket of water over my head, but did make a donation. ALS, she points out, is a “costly and devastating disease”, and the ALS Association helps not just by funding research, but by providing medical equipment and speech devices, or loans to acquire them, when they aren’t covered by insurance. They’ll help out with home health care aides, and caregiver respite funding, and they run support groups. They helped make it possible for Gae to attend her daughter’s wedding. “Every piece makes a difference for us.” Pass those buckets. Source
