Saturday, August 30, 2014

ALS Association admits 73% of funds don't go to research - or lies, damn lies, and Facebook statistics

I suppose the backlash against the popular Ice Bucket Challenge and its main recipient, the ALS Association, was as predictably inevitable as the tabloid outing of a virulently homophobic Christian preacher or a crassly stupid statement by the celebrity you just described as "A genuinely nice person, despite being rich and famous." That doesn't stop me being disappointed in people falling for it though - especially when the backlash is so jaw droppingly stupid.

Take this article from, which seems to be an Internet home for the intellectually challenged. The headline reads:


A more misleading headline you would struggle to find. The article begins:

We've been duped.
No, you haven't. The article continues:

But wait? Ice Bucket Challenge donations are nearing $100 MILLION. Where is that money going?
According to the ALS Foundation, not towards ALS.

Bullshit. I often wonder how people manage to type English, without being able to read or understand it first.

Then, the articles shocking reveal:

Over 73% of all donations raised are going to fundraising, overhead, executive salaries, and external donations. Less than 27% is actually used for the purpose we donated for.

Wrong again. The really worst part is that the article actually links to the chart that the ALS Association uses to explain how it spent funds in a recent year. Then proceeds to lie and twist it anyway. Got to admire the cheek at least, I suppose. You can find the ALS Associations financial information here. The chart in question is this one:

So, yes, 73% of expenses for the year ending January 31, 2014 were not for research. However, the description of how this 73% was spent is exceptionally dishonest and misleading. Not to mention that the most recent update to the financial information on the ALSA website states the figure spent on research is actually 28%, they originally miscalculated - so these backlash articles can't even get that right. So it isn't less than 27% - it's more than!

Only 7% was spent on administration and only 14% on fundraising - that includes overhead and salaries for everyone working for the Association (it isn't just executives that get paid you know - from what I can tell from looking at their IRS forms, combined executive salary was approximately $1.8 million of approximately $5.8 million spent on salaries and benefits) AND if they didn't spend money on fundraising, they wouldn't have any money to spend at all - it's an operating cost for goodness sake. That's 21% of the Association's expenses. The remaining 51% is dismissed by this silly article as "external donations". Well that sounds appropriately underhand and sketchy right? I bet it went to those dirty immigrants and unwed mothers. Or maybe abortions. Or ISIS. Or maybe ISIS abortions run by immigrants for unwed mothers. Amirite?


It went to fund the other stated purposes of the ALS Association - public and professional education and patient and community services. In other words, it went "towards" ALS. I say "towards" because the money isn't going to the disease, who would write such a stupid phrase?  It is going to efforts to fight it, and to educate people about it, and to help those suffering with it. You know, the purposes of a charity devoted to fighting ALS. These other purposes are explicitly stated on the ALS Association website:

How does The ALS Association use its annual budget?
The ALS Association has posted its audited financial statement online here. On that page you can see a pie chart which breaks down our expenses from this document from the fiscal year ending in January 2014. Please note that our expenses are broken down by two major types of activities as required for not-for-profit voluntary health agencies – Program Activities and Supporting Activities. Below is a brief description of what services and activities are included in each category:
Program Activities
  • Research: Our research entails involves funding for global studies to find the causes of and treatments - and ultimately a cure - for ALS. These activities encompass grants and funding for ALS research and associated costs related to our research program. This program takes a collaborative approach by interacting with scientists around the world and academia, government agencies, and the pharmaceutical industry.
  • Patient and Community Services: Our Care Services program provides compassionate care and support for people living with ALS and their families. Our 38 chapters assist those living with Lou Gehrig’s Disease by offering them access to loan closets, support groups and information about local resources to help them better cope with the demands of this disease. In addition, our Certified Treatment Centers of Excellence deliver the best of multidisciplinary care to individuals with ALS, and our Recognized Treatment Centers serve the medical needs of those living with the disease.
  • Public and Professional Education:  Through public and professional education, The Association educates healthcare professionals, scientific communities and the general public about Lou Gehrig’s Disease and the work we do in assisting those battling ALS. Our Public Policy Department works with national and local legislators as well as government agencies to advance legislative policies that benefit ALS families. Each year, The Association’s Public Policy Department hosts National ALS Advocacy Day and Public Policy Conference, whereby members of the ALS community travel to the nation’s capital to educate Congressional members about ALS and to share their stories about how this disease has impacted their lives with these national legislators.

If the author of the article was interested, even remotely, in getting to the truth of what he or she was writing they could have found this out very easily. I wonder why they didn't bother to mention it? And notice that there are no comments allowed on this article. Wouldn't want people correcting the author now, would we?

But it doesn't end there. Stupid never quits. 

That pie chart shows the figures for the year ending in January 2014 - so it doesn't even include the funds donated because of the Ice Bucket Challenge. To say, or imply, that only 27% of funds raised by the Ice Bucket thing goes to research is a big fat lie. Not even the ALS Association knows exactly how the money raised will be spent yet:

Can you give me a breakdown of how each Ice Bucket donation dollar will be allocated?While research and care services to patients and their families are our top priorities, we cannot provide a breakdown at this time. We appreciate the sense of urgency that exists and are already engaged in discussions on how we’re going to put this money to work in the short term and into the future. 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. We want to move quickly but decisively as our ultimate goal is to use this incredible generosity in a way that has the biggest impact on the disease.
The ALS Association is absolutely committed to transparency and will be communicating regularly with the ALS community, our donors, the media and the public about progress in funding projects and programs to support the cause.

 The money being raised by the Ice Bucket Challenge has not yet been spent - anyone who tells you they know how much of the money has been spent on research is a lying fucking asshat with an agenda.

And what is that agenda?

No moral outrage against current social trends would be complete without throwing religion in, so the author throws in some Christian charity watchdog which claims that you can only be a reliable charity if you give 80% of expenses, or more, to the cause you are recieving donations for. And I am SURE that no religious charity ever broke that rule. But hey, since the ALS Association gets to 79%, who is going to quibble? Right wing religious nuts, that's who. I think we can see the real reason for these silly attacks now, can't we?

Oh, you didn't notice that the standard they cite is a Christian one? That's because they left that bit out, they wrote:

According to the ECFA, a charitable watchdog

No - a religious charitable watchdog. A Christian watchdog with an agenda. That watchdog requires charities to be Christian and have a statement of faith. The ALS Association has funded embryonic stem cell research which is opposed by Christian religious pro-life groups. You do the math.

Congratulations, by quoting or re-posting this article you are serving the religious right's agenda. Bravo.

Anyone who keeps repeating this stupid article, and others like it, without bothering to check facts first should hand in their critical thinking card when they leave please.