The ALS Ice Bucket Challenge—This One’s Personal

Guest Commentary by Lois Yurow
On the first night of a class about CSR, one of my professors expressed some skepticism about the ALS ice bucket challenge. (He wasn’t the only skeptic; see here and here, for example.) It was September 2014, and you couldn’t look at your computer or phone without seeing your friends, your co-workers, your governor, or your favorite actors and musicians drenching themselves in cold water for a cause.
I very much wanted the professor to be wrong. I lost my mother, Bette (shown below, at my wedding), to ALS in 2003, and knew full well there was a dearth of information about what causes the disease and how to slow it down, much less how to wipe it out.
The ice bucket challenge had a fundraising component, of course. The idea (if you weren’t paying attention two years ago) was to post a video of yourself dumping a bucket of ice water on your head, and then challenge specific people to either do the same thing or “buy” their way out of the dare by making a donation to the ALS Association.
Many people dumped the water and made a donation, ultimately raising $115 million for the ALS Association in a span of eight weeks and another $105 million for other ALS-related organizations.
Some fun facts about the challenge:

• ALSA received donations from over 3 million sources (individuals, companies, etc.) between June and August 2014.
• Roughly 2.4 million ice bucket videos were shared on Facebook, and 2.33 million were shared on YouTube.
• Over 28 million people posted an ice bucket video or liked or commented on a video.
• Visits to the Wikipedia page about ALS increased by more than 100 times.

When the challenge petered out, the shocked and gratified ALSA issued a press release to announce that the Association would convene stakeholders — including patients and their families and leaders of the Association’s local chapters — to develop a “cohesive plan” for using the money.
The ice bucket challenge certainly generated some big money donations (I’m looking at you, Leo DiCaprio and David Spade), but the average was under $50. Since we’ve had a whole lot of other things — like ISIS, a presidential campaign, and tensions between police and minority communities — to worry about in the interim, the ALSA might have left it at a promise to develop a plan and few people would have noticed. So I was impressed when I saw this press release, which explicitly (six times!) ties a research breakthrough to the money raised from the ice bucket challenge. It caused me to look back at the Association’s communications over the past two years.
The ALSA’s annual report for the fiscal year that ended in January 2015 was jubilant, and promised: “We are committed to strategically spending ALS Ice Bucket Challenge contributions over time in order to maximize the impact of your commitment to find the cure for ALS once and for all.” (The report for the fiscal year that ended in January 2016 is not yet available, but financial statements for the year are posted.) The 2015 report acknowledges that the ALSA did not originate the challenge, but eagerly adopted it:

The Association was able to grow our following on Facebook from 30,000 to more than 300,000 after the ALS Ice Bucket Challenge. Unique visitors to our website went from an average of 20,000 per day to up to 4.5 million at the height of the challenge.

Our strategy very early on was to operate with the utmost transparency, providing a daily accounting of dollars raised through the challenge. This helped fuel the ice bucket story, resulting in even more donations not just to The ALS Association but to other ALS charities worldwide.

The challenge raised awareness in addition to money. For example, participation in ALSA’s annual Walks to Defeat ALS (held in every state) increased by between 30% and 100% in the fall of 2014.
Today, this is the first thing you see when you go to alsa.org:

The “learn more” button takes you to page that emphasizes the “every drop adds up” theme—the idea that small acts (and donations) can join to produce great results. There is a short video and, of course, a hashtag: #everydropaddsup. There is an infographic showing the history of the ice bucket challenge (did you know Homer Simpson participated?) and how what began as one family’s quirky idea became “the world’s most significant social media phenomenon.” There are links to stories—of researchers, fundraisers, advocates, and patient families—each ending with an appropriate tagline: “Every [bucket][mile][discovery][cent] adds up.”
The ALSA website also has a page and hashtag (#ChallengeALS) that encourages people who want to go beyond the ice bucket challenge to participate (say, by joining a fundraising walk or a local ALSA chapter), advocate (learn about legislation and lobby for change), and donate.
But about the money: We want to know what they did with the money.
This infographic shows how the $115 million was used and what it has accomplished so far. A second, interactive, infographic shows the spending another way, giving specific details about the money used for research (67%), patient services (20%), education and advocacy (9%), fundraising (2%), and administration (2%).
I’d say ALSA has certainly been transparent. (Important: the credible Charity Navigator agrees.) Even better from a communications perspective, the organization:

• recognized a successful organic phenomenon,
• stepped up quickly to support it,
• gave it institutional backing to prolong the excitement (#everydropaddsup),
• highlighted a tangible success (the recent press release), and
• expanded its scope (#ChallengeALS).

I wish my mom could have been here to see it.
Guest Commentator Lois Yurow is founder and president of Investor Communications Services, LLC, where she specializes in converting complex legal, business, and financial documents into plain English.  Mutual Fund Regulation and Compliance Handbook, a book she co-authored and updates annually, is published by Thomson West.  Lois, who is pursuing a Master’s degree in Communication and Information Studies, writes and speaks frequently about plain English, disclosure, and other securities law matters.  Before forming Investor Communications Services, Lois practiced corporate and securities law, first in Chicago and then in New Jersey.  Email: lois@securitieseditor.com 
Copyright (c) 2016 by Lois Yurow – All Rights Reserved