ALS Ice Bucket Fraud?

ALS Ice Bucket Fraud?

First off, I want to begin this blog post by saying that I am not against donating in general. I donate to local charities whenever I can because I believe that the larger the charity the more waste and embezzlement there is at the top. Donating time to help people can be just as important. Help your fellow humans!

The ALS Ice Bucket Challenge seems like a good idea at first. Donate $100 to ALS research or donate however much you can and spill a bucket of ice water on yourself to have a tiny understanding of what it is like to have ALS while sharing it with the internet. I can understand why it went viral, who does not want to see their friends, family, and favorite celebrities get dunked with a frigid bucket of cold ice water?

ALS is a horrible disease that has even afflicted famous people including Lou Gehrig and Stephen Hawking. Who would not want to donate to help people suffering from a debilitating disease?

I will not currently donate to the ALS association and you should not either.

Now before you hold me over the flames hear me out.

Let us look at the ALS association’s annual report?

The first picture on the report is a researcher hopefully finding a cure for ALS. This picture really tugs on the ol’ heartstrings.

This report shows where all the donation money the ALS foundation went to. Let us find out!

Wow, the ALS Association had a revenue in fiscal year 2012 of $65 million dollars. Most of that profit must have gone to research. According to their report only about 11% or seven million dollars of their revenue. So where did the rest of the money go? Did it go to raising awareness?

Well the ALS foundation spent about 14% on raising awareness or nine million dollars. I can understand spending money on raising awareness, but should not more money be spent on research? Maybe at the very least 20%?

Any foundation has to have salaried employees, require office space, and pay business expenses to continue operating. So how much of the raised money went to keeping the ALS Association running? Well about 8% or five million dollars. That does not seem too bad; I can live with that easily. In all honesty, I would have no issue with the foundation paying a higher salary to its employees as long as more money went to research and the amount was honestly disclosed.

Is something is strange about these numbers? Are we not missing about forty million dollars or about 67% of their total accounted revenue?

It is listed on the report as other program activities.

Well, okay those other program activities have to be listed on the report right? I mean this is not a low amount of money unaccounted from the books. An unaccounted for forty million dollars could go to research or awareness. Hell, I would not even complain as much if I knew it was going to pharmaceutical companies or government lobbying as long as I know where the money is going.

It is not listed, anywhere on the document. Forty million dollars unaccounted for, in a nonprofit charity that is supposed to help fund research and raise awareness for ALS.

Wait a minute! I found a new pie chart on their website and last year’s financial information. Please tell me they disclosed where all the missing money went to and that more money went to research!

ALS 2014 Expenses Pie Chart

Well unless I am reading this wrong, all of their money was accounted for last year but they made about forty million dollars less? What caused the ALS Association to have a large decrease in fundraising last year? The ALS Association made fifty million in 2011 and guess what? Thirty two million dollars of it when to unlisted “other” expenses again. Did they make a mistake and not fully report their profits for 2013 or did they do it on purpose to make it appear that all of their money is being spent properly?

Can we believe any financial statement that the ALS Association has released? Is any money truly going to honest research? If anyone can prove to me that my assumptions are wrong with cold hard facts, I will donate $100 myself.

In addition, if you have ALS I also implore you to change your diet. Look into the Bulletproof diet or Wahls protocol to possibly improve your life. I would research how to increase SOD or I would supplement daily with a SOD enzyme. Some research concludes that people with ALS might have a mutation of their SOD1 genes.1 SOD is a powerful mitochondrial antioxidant and possible damage to those genes can cause extensive free radical damage to their delicate neurons. I would also look into the possible link between ALS and chronic Lyme disease.

This all seems ice fishy if you ask me. What do you believe happened to the unaccounted for money?

    • You accounted for the information covering the audit of 2013. The audit that was performed in 2013 did not show any expenses listed as “other,” but they brought in or did not report a lot less money. Where is the missing money from the other years?

  1. Hey Sarah, what is your blog? It sounds really interesting.

  2. Right on the money!

    I wrote an article, showing how about 95% of the money those ALS organizations disappears into their own pockets:

    • Dear Sarah,

      I am a fan of your blog, I stumbled across it on the Lyme Disease Awareness group page on Facebook. I believe that Chronic Lyme Disease can be a cause of many different diseases and disorders. Just like researchers have known for years that Crohns Disease and Ulcerative Colitis are caused by a Mycobacterium avium paratuberculosis infection, someone continues to suppress the connection of Lyme Disease to other diseases. Keep raising awareness!

      John Brisson

      • Yes.. And how close to 100% of stomach ulcers turned out to be infections with Helicobacter pylori, after countless people died of them because the medical establishment claimed they were due to “stress”.. The guys who discovered that were maverics, medical rebels who did their experiments with antibiotics in secret.

  3. I never thought of it that way Mark, very true. Basic logic would assume that if a “non-profit” makes research headway, they would in turn give away their findings for no profit. Which would be the definition of a nonprofit.

    So, what happens is this. Subject A donates 5k to a charity for ALS research; the money is invested in a research facility. People who work at the facility invent a new drug. The pharmaceutical companies then take that research, buy it and patent and sell it back to you when you are sick.

    • I understand that Pharmaceutical companies have to make money for the research and production by selling medicine. It is the insane prices that they sell certain medications that gets me.

  4. Has anyone considered that people are donating to a research facility,
    That then ultimately sell the product after it is patented back to you.

  5. Interesting points. I think the thing to keep in mind is non profits are usually very business minded. We like to think of them as purely helping others, but in reality they grow and grow. That means raising more money to keep staff.

    John, what do you believe is the reason we haven’t cured any major diseases since polio?

    • Medical science has not truly “cured” any diseases in the 20th century. They have used vaccinations to both keep some diseases to a minimum in first world countries but at the cost of some lives as well. Polio has not been “cured” it is just not as infectious in the first world. Complete eradication of a disease is what I consider a cure to be.

      The real question is has mainstream medicine cured or made any scientific headway into any chronic conditions like ALS, Lupus, Cystic Fibrosis, etc?

  6. There is not much research but in my head. I’m an investor, and the $65mln refers to a consolidated expenses. They could have done a better job indicating what exactly is getting consolidated, but it doesn’t invalidate the fact that the ALS financials are correct and reasonable.

    Some local ALS Associations are separate entities, run as stand-alone from the ALS Association. They are included in the consolidated revenues + expenses just as additional info. There is no ‘missing money’. It’s just in the financial reports of the local ALS Associations, who have their own revenues and their own expenses. And there was nothing strange to see when I went over three of them. They were quite similar with regard to their expenses (percentage wise).

    Also note that revenues are not cash. They actually came out short and had to spend 150K of their cash, consuming part of their assets.

    Of course you still have to ask yourself if 23% of total expenses going to actual paid out research grants is ‘enough’. Besides, they also overstated the % going to research (they say it’s 27%), so they’re not holy.

    • The $65 million is not their expenses it is their revenue and 40 million dollars of it is listed as other expenses and is not accounted for in the report.

      I looked at three to four chapters as well and it seems that their records are more accurate.

      I will keep researching.

  7. It’s not very well disclosed, but the $65 mln refers to the consolidated of all ALS (local) associations and chapters combined (Greater NY Chapter, Connecticut Chapter, etc). It is not undisclosed; they are accounted for as well. I’ve checked the financial statements of the local chapters, and the expenses are more or less equal among all:

    Program (awareness, research grants): 72%
    Overhead: 11%
    Fundraising costs: 17%

    Although research is somewhat overstated. Should be 6.8 mln, or about 25% goes to research. Overhead is somewhat understated.

  8. I believe most of the unaccounted for money went to already deep pockets. No proof of this but I would wager I’m not the only one to have this opinion.

  9. Yeah, John that does seem really weird but wouldn’t reporting it like that be really sloppy?

  10. What does the 40% to raise awareness buy them? If more people know about ALS they will donate and the disease will be cured faster. Is that the logic?

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