The #ALSIceBucketChallenge is a new species in the evolution of online fundraising, or crowdfunding. Never before has the Internet spawned such a pro-science, meme-driven campaign that has united folks like Bill Gates and George W. Bush in common cause. Not to be outdone, 9 Democrats and 7 Republicans in the House of Representative who voted for budget cuts to NIH in 2011 were perfectly happy to take a bucket of ice water on the head. At least 2 million others have joined them thus far.

If this is amyotrophic lateral sclerosis’s, or ALS’s, 15 minutes of fame, then every second has been worth close to $100,000. Thing is, ALS first had 15 minutes of fame way back in the summer of 1939, when Lou Gehrig announced to the world that he had been diagnosed with the monstrous disease that has robbed hundreds of thousands (if not millions) of their lives since.

I’m a student of crowdfunding, in particular science crowdfunding. The first thing I do when I want to understand a crowdfunding campaign, whether in a post-game analysis or in midstream, is to plot donations and donors over time. Doing so also tells you the average donation size. Here are the running totals for #ALSIceBucketChallenge from August 13th till today, or the last two weeks:


The average #ALSIceBucketChallenge donation is approximately $50 (including only new donors), in line with the average for campaigns on platforms like a Kickstarter and Indiegogo. The campaign leveled up on August 19th, I believe in the wake of Bill Gates’s challenge video (viewed over 16 million times), which I first saw on August 15th. The day before, my brother and Perlstein Lab cofounder Henry Perlstein challenged me on Facebook, and that’s when I in turn had the idea to challenge the Perlstein Lab team:

I had first heard about the #ALSIceBucketChallenge the week of August 11th, and my initial reaction was surprise and excitement but also hesitation. What about the other 6,999 rare diseases that also desperately need funding and awareness? And what about accountability? How would the community of ALS organizations and foundations – not all of which play nice together – spend this windfall?

Then it started to dawn on me that I was being a bit of a concern troll. I started to read the tweets of dying ALS patients and their scarred survivors. These first-person accounts gradually rose above the din of those crying slacktivism. It dawned on me that the only people I had known with ALS were Lou Gehrig himself, famed astrophysicist Stephen Hawking, and, most recently, former NFL player Steve Gleason. The estimated 29,997 other Americans with ALS, let alone all ALS patients worldwide, had been completely unknown to me. I considered myself enlightened but then realized I didn’t truly understand how particularly vicious and mysterious ALS actually is. And how unlike it is to cystic fibrosis, the poster child of orphan diseases, in terms of the underlying genetics. ALS doesn’t involve a single broken gene but multiple defective genes and possibly environmental insults as well. In fact, 90% of ALS cases are idiopathic, or non-genetically spontaneous. When Lou Gehrig came out with ALS in 1939, the NIH was already 1 year old. 75 years and many tens of millions of dollars on ALS research later and there is still no cure for ALS, just a crappy drug approved almost 20 years ago.

Then the #ALSIceBucketChallenge challenge started to become a victim of its own success. Some well-meaning folks got distracted, fatigued or simply annoyed by all the buzz, their Facebook streams and Twitter feeds clogged with videos of friends and family dousing themselves with ice water. Skeptics wondered aloud why folks weren’t just donating quietly, missing the entire point of a viral campaign. Those in the know about NIH’s budget woes lamented that no one was clamoring with equal fervor for increases in federal spending on basic research, missing the lesson that online engagement works, perhaps more effectively than traditional DC-based lobbying efforts. Some Californians denounced the wasting of precious water in a state of exceptional drought, though eating a steak is much more devastating to the environment than a few gallons of spilled water. (Kudos to actor Matt Damon for using toilet water in his #ALSIceBucketChallenge).

So how much will the challenge raise when it’s all said and done? At the current pace the total will break $100M in the next day or two. Labor Day is a natural stopping point, marking the end of warm days of summer. Assuming $8-$10M per day for the next week, that puts us in the $125-$150M range. The only way it goes higher is if it starts taking off in other countries, and there are indications that it is going global. But remember, the above data and the totals that get thrown around are donations received by the umbrella group ALS Association. But there are dozens of other ALS orgs. My guess is we’re already above $100M raised if you sum across all donations to ALS since the end of July.

Perhaps some external jolt will come along and give the campaign a second wind next month. Maybe a famous person reveals an ALS diagnosis. Maybe Stephen Hawking does a parody challenge and gets Warren Buffet or the Davos set to match all the funds raised to date. Could we end up at a number like $250M? Now you’re talking the size of a small NIH institute budget. What then? What does ALSA do with its share? Last year the org spent 32% of its budget on awareness and 7% on fundraising:

alsa budget

Presumably all of those funds can now go to research, which was only 27% of the last year’s budget. What about a pledge from all ALS orgs to spend $0.5 of every #ALSIceBucketChallenge $1 on pure research, both preclinical and clinical, and both conservative and blue-sky projects? However big the windfall ends up, there will be opportunities to experiment with new grant models with built-in Open Science provisions, even try the X-prize/Innocentive model. The windfall can be leveraged in so many ways.

So what are we to expect in 1 year’s time? In 2 years? In 5 years? In a decade? Will the echoes of the challenge still be reverberating? Can the Cystic Fibrosis Foundation collaboration with Vertex that resulted in Kalydeco be replicated in ALS? Or because ALS today is much less well understood than cystic fibrosis was in 2004, should $50M of #ALSIceBucketChallenge donation be matched with another $50M to create a fund to fully genome sequence every American with ALS? I bet the genome analysis could even be crowdsourced.

All I know is that I will do everything in my power to hold the ALS orgs, in particular ALSA, accountable, and I hope the other 2M+ new donors do the same. Let’s show the world that an edifice of Open Science can stand tall on a foundation of flash.

Photo by Anthony Quintano

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