The Story Behind the Ice Bucket Challenge

This year, the ALS Ice Bucket Challenge has become a viral phenomenon, serving as a source of entertainment amongst Facebook friends, and at its best raising awareness to a once little-thought of disease that the ALS Association says affects “30,000 Americans at any given time.” Online costume shop Brands on Sale has even started selling an Ice Bucket Challenge Costume in honor of ALS, or Lou Gehrig’s disease, in preparation for Halloween.

As of August 29, 2014, The ALS Association has raised $100.9 million, according to a press release on its webpage.

The world has its host of issues, and on the one hand it can be argued that it is a serendipitous “good” when people take the time to pause and act on behalf of the problems we don’t always take notice of.

Still, it is more than slightly disconcerting when the attention given a cause appears frequently at only a superficial level, without prior thought to the implications of a disease or an organization that represents it.

The concept of moral licensing becomes noteworthy; William MacAskill, founder and president of 80,000 Hours, writes about this on Quartz.com, “if someone donates $100 to the ALS Association [or any organization, for that matter], he or she will likely donate less to other charities.”

And 100 million dollars—where is all that money going, really?

According to a break-down of the ALS Association’s spending, only 27% of expenses are spent on research alone. The association insists its mission is a three-pronged approach to addressing the disease—public policy, research, and care services. Analyzing the pie chart in the association’s break-down, you’ll notice that expenses for the fiscal year ending in January 31, 2014 were allocated at 32% (public and professional education), 27% (research), and 19% (patient and community services).

Indeed, these three sectors or “prongs” make up the largest pieces of the expense pie, though you’ll observe that research and community services still make up a relatively small percentage when combined at 46% (27% + 19%), in comparison to organizations like The Red Cross and The Salvation Army, who spend 91% and 82% of its expenses, respectively, on direct aid. According to Charity Navigator, a non-profit that evaluates charities in the U.S., Save the Children, Alex’s Lemonade Stand, and The American Heart Association spend 90%, 86%, and 78% of their expenses, respectively, on program expenses and direct services. The ALS Association is rated as providing 73% of its services on program expenses, just under the general recommendation that people donate to organizations that give 75% of their raised money to direct efforts.

Currently, the ALS Association says they are unable to provide a breakdown of how each Ice Bucket donated dollar will be allocated. Under the FAQs section of the ALS website, it states, “While research and care services to patients and their families are our top priorities, we cannot provide a breakdown at this time. . .Now and in the coming weeks, we will be able to enhance our strategic plan, reformulating and recasting strategies with input from stakeholders, including our donors, our chapters, and most importantly, people living with ALS and their families.”

The association states that if you wish for your donation to be 100% given to research, you simply need to check the research box on the online donation form (or include those instructions on a mailed donation form).

In the end, raising awareness for ALS is beneficial, as is raising awareness of several other neurodegenerative disorders, such as Alzheimer’s, Parkinson’s, and Huntington’s disease, just to name a few examples. Like any good consumer of a product, however, it is useful to do some personal research into a cause—no matter what it may be—and where its funds are allocated, prior to the dumping of a bucket or acceptance of a challenge. After all, the world needs more than just face-value attention to the issues that count; it needs true consciousness and respect for victims of adversity, set in a balance of responsible fundraising and awareness-building.

63 thoughts on “The Story Behind the Ice Bucket Challenge

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