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Ice Bucket Challenge: ALS Foundation Admits Less Than 27% Of Donations Fund Research & Cures

Anthony Gucciardi
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August 28th, 2014
Updated 08/28/2014 at 1:24 am
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als association donation spending 263x164 Ice Bucket Challenge: ALS Foundation Admits Less Than 27% Of Donations Fund Research & CuresAs a huge proponent of serious charitable organizations, it always is disturbing to see trends such as Kony 2012 and various Susan G. Komen for the Cure initiatives take the social media atmosphere by storm. From the ultimate backlash against the celebrity-driven Kony fraud to the embarrassment of the KFC ‘Buckets for the Cure’ campaign backed by Susan G. Komen, I was immediately hoping that the infamous new ‘ice bucket challenge’ would in fact be an exception to the series of misled social media fundraising campaigns.

As soon as the ALS Association published its official numbers and my contacts within the investigative community confirmed the worst, however, it was apparent that once again we have been shoveling (or dumping in this case by the bucket-load) our hard earned funds into an organization that only uses about 27% of its financing to actually fuel research ‘for the cure’ — which just so happens to be based on pumping up the bloated pharmaceutical industry.

But don’t just take my word for it.

$95 Million Later: Only 27% Of Donations Actually Help ‘Research The Cure’ 

Reaching over 94 million in donations at the time of writing this article, thanks primarily due to the viral ice bucket challenge marketing campaign, you may be surprised to see the admitted breakdown of the company’s donated resources. You may be even more surprised to see the income breakdown within this non-profit that prides itself in helping ‘find the cure’ for ALS — now the most common among the five motor neuron diseases. From the company’s own records, we find the following cost breakdown for the year ending in January of 2014:

als association donations Ice Bucket Challenge: ALS Foundation Admits Less Than 27% Of Donations Fund Research & Cures

Research, as you can clearly see, sits at only 27% of the organization’s overall expenditures. Fundraising (marketing), stands at around half at 14%, and 1.9 million in administration (7%) was spent on their roster of highly paid non-profit executives. In fact, we even have the salary figures for each executive, including the ALS Association CEO’s six figure total:

  • Jane H. Gilbert – President and CEO – $339,475.00
  • Daniel M. Reznikov – Chief Financial Officer – $201,260.00
  • Steve Gibson – Chief Public Policy Officer – $182,862.00
  • Kimberly Maginnis - Chief of Care Services Officer – $160,646.00
  • Lance Slaughter - Chief Chapter Relations and Development Officer – $152,692.00
  • Michelle Keegan – Chief Development Officer – $178,744.00
  • John Applegate – Association Finance Officer – $118.726.00
  • David Moses – Director of Planned Giving – $112,509.00
  • Carrie Munk – Chief Communications and Marketing Officer – $142,875.00
  • Patrick Wildman – Director of Public Policy – $112,358.00
  • Kathi Kromer – Director of State Advocacy – $110,661.00

And let’s be clear: I am a huge proponent of prosperity and business expansion. When it comes to private business and commerce, it benefits us all to see growing numbers among a company and its members. This, however, is not the case for a ‘non-profit’ organization that is based around the concept of ‘searching for the cure’ and ‘funding research’ as its primary goal. Especially when this organization is being funded with close to 100 million dollars through a viral social media campaign in which it appears no one truly took the time to investigate the very company they are shoveling their assets into.

But as our friend Sayer Ji of GreenMedInfo points out in his breakdown of the ice bucket phenomenon, even the smaller portions spent on ‘research’ for ALS are actually going towards pharmaceutical interventions and the pharmaceutical industry at large. There is simply no room to spend even a single percent of the $100 million in an effort to educate you about the reality that numerous studies available through the United States National Library of Medicine have demonstrated the natural preventative effects of key substances like:

Vitamin E: Shown by research to exhibit a whopping 50-60% decreased risk of developing ALS when taken alongside powerful polyunsaturated fatty acids.

Vitamin B12: Demonstrated by scientific study to be highly beneficial in the aid and understanding of ALS. In fact, PubMed research specifically reveals the integral usage of vitamin B12 in ALS research:

“To develop a symptomatic treatment for amyotrophic lateral sclerosis, we compared the effects of ultrahigh-dose and low-dose (25 and 0.5 mg/day, intramuscularly, for 14 days) methylcobalamin on averaged compound muscle action potential amplitudes (CMAPs) in a double-blind trial. No significant changes in CMAP amplitude were found in 12 patients who had the low-dose treatment at either 2 or 4 weeks after start of treatment. By contrast, 12 patients assigned to the ultrahigh-dose group demonstrated a significant increase at 4 weeks. This method may provide a clinically useful measure to improve or retard muscle wasting, if a larger extended trial fulfills its promise.”

And the list goes on. But what’s even more important to consider is the lack of information regarding the actual cause of ALS, which may be even more valuable to many sufferers. Looking to the research we find an extensive list of culprits that can be identified and reduced, including:

Pesticides: Not mentioned by the ALS Association, a number of studies have drawn links between ALS and pesticide exposure.

Lead: Often contaminating the food supply and foreign products, 4 studies have demonstrated a relationship between lead and ALS at large.

Statin Drugs: You may already be well aware of the dangers surrounding statin drugs, in which case this may not surprise you. ALS has been identified as a possible side effect of these drugs that aim to reduce cholesterol.

The Bottom Line: Spread Information, Give to Trusted Charities

Amid all of the social media madness when it comes to charitable organizations like Susan G. Komen and now the ALS Association, it remains true that the key element necessary for real change is the spread of information. And when financial abilities allow for it, supporting real charities with a proven track record of directly supporting its stated goals with the bulk of its financial power.

As a major believer in supporting real charities, I always am searching for real organizations that follow these principals. Earlier this year, I found out about a Washington native named Ben Charles whose charity had been shut down by beauracratic government officials — even going as far as to threaten Ben with arrest for feeding the homeless on the streets of Olympia. Concerned about this issue, I further reached out to Ben back in early December of 2013, documenting the government crackdown on his initiatives and others.

Later that month, I gave another church that was targeted by the government for handing out turkeys on Thanksgiving a $1,000 donation in order to purchase additional food items (specifically turkey) and distribute it among those who needed it in the area — a proverbial middle finger to the bureaucratic park rangers and officers who sought to shut them down. This was also done as an initiative to drive others to do the same.

Now, amid yet another social media donation campaign that has led to almost 100 million going ‘towards the cure’, I am inspired (and want to inspire others) to give to a charity that really gives directly to the people it seeks to serve. That’s why I am giving $2,000 to Ben Charles and his grassroots ‘Crazy Faith’ food program in Olympia, Washington in order to help feed hundreds of homeless individuals on the streets with healthful food items.

With this donation, 100% is to be used in order to purchase high quality foods to feed those in need — and educate them on how to better their lifestyle with wholesome foods.

Whether or not you have the funds available to support your local communities, what’s even more important is the spread of information. If everyone donating to the ALS Association actually took the time to share key articles such as those highlighting the dangers of ALS-linked toxic substances, or those discussing the power of natural alternatives to ALS treatment, millions would be helped within hours.

No matter what the next social media fad becomes, always remember that it is your voice that propels change and life-saving differences.

About Anthony Gucciardi:
1.thumbnail Ice Bucket Challenge: ALS Foundation Admits Less Than 27% Of Donations Fund Research & CuresGoogle Plus ProfileAnthony is the Editor of NaturalSociety whose work has been read by millions worldwide and is routinely featured on major alternative and mainstream news website alike, including the powerful Drudge Report, NaturalNews, Daily Mail, and many others. Anthony has appeared on programs like Russia Today (RT), Savage Nation, The Alex Jones Show, Coast to Coast AM, and many others. Anthony is also dedicated to aiding various non-profit organizations focused around health and rehabilitation as well as the creator of the independent political website Storyleak

From around the web:

  • Nosa Jeffery

    I Am Mrs vera, i live in Texas (USA).
    [READ MY STORY. ON HOW I GOT MY ALS CURED].
    Truthfully, i was tested ALS positive last 3years. I keep on managing the drugs i usually purchase from the health care agency to keep me healthy and strenghtful, i tried all i can too make this disease leave me alone, but unfortunately, it keep on eating up my life, this is what i caused myself, So last few 4days i came in contact with a lively article on the internet on how this Powerful Herbal Healer get her well and healed. So as a patient i knew this will took my life 1 day, and i need to live with other friends and relatives too. So i copied out the Dr samoda the traditional healer’s email id: samodaspellhome@gmail.com, and I mailed him immediately, in a little while he mail me back that i was welcome to his temple home wereby all what i seek for are granted. I was please at that time. And i continue with him, he took some few details from me and told me that he shall get back to me as soon as he is through with my work. I was very happy as heard that from him. So Yesterday, as i was just coming from my friends house, Dr samoda called me to go for checkup in the hospital and see his marvelous work that it is now ALS negative, i was very glad to hear that from him, so i quickly rush down to the nearest hospital to found out, only to hear from my hospital doctor called Browning Lewis that i am now ALS NEGATIVE. I jump up at him with the test note, he ask me how does it happen and i recide to him all i went through with Dr samoda. I am now glad, so i am a gentle type of person that need to share this testimonies to everyone who seek for healings, because once you get calm and quiet, so the disease get to finish your life off. So i will advice you contact him today for your healing at the above details: Email ID: samodaspellhome@gmail.com… CONTACT HIM NOW TO SAVE YOUR LIFE: samodaspellhome@gmail.com AS HE IS SO POWERFUL AND HELPFUL TO ALL THAT HAVE THIS SICKNESS…

  • Credenda

    if 32% of 94 million is used to fund education, that seems like an extravagant amount to teach us all about something they don’t know anything about! Plus they missed me and everyone I know. Personally I give food and money to homeless people because I want to help vulnerable people, not pay/contribute towards someone’s 300,000 salary. I’d rather fund a charity that is more frugal with their money and more successful with their results and research!

  • David

    People need to realize that for neurological diseases medical research hasn’t been all too successful, other than stroke. Most pharmaceutical remedies treat the symptoms and other than cancer and infections, most drugs do not “cure” the disease. Research is ungodly expensive and the return in “finding a cure” is extremely low. After 30 years in research, I’ve seen an increase in money going to bean counters and paper shufflers at the expense of research projects and success. The 2013 ALS Association’s expenditures report is indicative of what we’re seeing in research. Gucciardi’s article is spot on.

  • Larrylongballs

    Also, those are old figures and they have not officially detailed how they will distribute money from the ice bucket challenge. Also your pie chart included 32% on public education and awareness. Without raising public awareness how can they run a charity?

  • Lloyd Harrower

    so 12% is = going to things that don’t Directly improve the quality of live for those suffering from ALS. thats better odds than the Wounded Warrior Fund.

  • http://www.tourabsurd.com/ Katrina

    We need to re-think the way we hold non-profits to double standards: http://www.ted.com/talks/dan_pallotta_the_way_we_think_about_charity_is_dead_wrong?language=en

  • vstokes

    Research is always longterm for such an incurable disease. It is nice to see that funds are going to those affected through education etc.

  • Kevin

    What you’re forgetting is 27% for direct research, 32% to help the people with ALS in their daily lives, when my cousins wife died of als last year, they had been given thousands of dollars worth of support, to include medications, counseling, electric wheelchairs, bathroom remodeling, to allow him to give her a bath and things like a special computor that allowed her to communicate with him using eye movement…as that was all she could still move…If you do your own research using independent charity rating sites you will find them highly rated. It seems most of the negitive comments I’ve seen are started or backed by religious organizations who object to the als charity allegedly using stem cells for parts of the reseach…..So what do we have then? 78% for research, education and direct assistance to those effected, 14% to raise funds and only 7% in administrative costs…those numbers look pretty good to me…

  • ashley

    If you have time to read this article, you have time to learn why % donated to research is low, and why this is not a bad thing: http://youtu.be/bfAzi6D5FpM?t=11m51s

  • PookahSF

    This is seriously has no journalistic value. As someone who claims to be “dedicated to aiding various non-profit organizations” – you should know better.

  • Spike

    Hey Anthony – my brother has ALS…so, could you donate $2,000 directly to him to help pay for his healthcare? He can’t walk or use his hands, so someone has to do just about everything for him. I understand if you just want to buy vitamin E or B12 for him…but the money would be more helpful in this case. If not…then it must mean that you find him not worth helping and you are prejudice against ALS patients. The ALS Association of Utica, NY works directly with my brother and the smaller local offices help the patients directly…so your donation here would go more toward the patients needs while the national office takes care of the research issues and the national educational events as well. So…step up and make your donation here if you want to help the patients directly. As for your homeless donation…that is very helpful…but there is the possibility that these people can help themselves if they work at it. But someone suffering from a debilitating disease cannot do that and they rely on others to help them. So with your point if view…these people do not count and they need to fend for themselves, even though most of them cannot. I have to say…you are the one of the stupidest people I have ever come across and I hope you learn to read more about a subject so that you understand it before spewing BS about it in the future. And those that hire you to write for them learn that you are a below average journalist that seems to get by on BS and not real facts or a clear understanding of your subject. Have you ever attended the annual ALS conference in DC where patients, caregivers and supporters converge on DC from around the country to get the respect they need from our elected officials…and the support as well. I would advise that you attend this event next May (usually held in May) so that you will have a better understanding of these people, what they suffer from and how they live each day, and how much support this disease has gotten in the past and how this viral challenge has helped this group of people. It’s easy to talk down about something you do not understand…and your little google research is not enough to make you an expert on the subject. I would suggest you work harder on your next article so that you do not come across as an idiot to those you are talking bad about. Good luck.

    • Bruce Wayne

      Right… just like Parkinson’s and Autism is genetic.

    • Amelia Vargo

      Sorry to hear about your brother, I hope he continues to receive support. I agree with you about the article, it’s misleading at best.

  • Maggie

    First of all, executives make that much money. Second, if you look at the actual recommendations of researchers working on ALS– they think the money should go to patient care because they have no leads on how to treat this disease and they need to know more about the disease and how it affects the body to do research. In other words, they need direction. Do your own research before you start grinding your ax.

  • lovethisUSA

    Not that I’m disagreeing with you, but this chart is for ending in January of this year. The salaries aren’t going to change, so that percentage number is going to decrease drastically ( while I agree, the top salaries are a tad bit on the high side ), the fundraising portion percentage is going to go down ( heck no one even had to go out to fund raise for this one, it was all online ), the others I think are respectable, when you talk about educating professionals ( I’m guessing medical ones ) and public ( probably families of those afflicted ), and actual different types of care ( which is the community, because they help out with outreach programs in getting home health care, transportation to and from doctors appts, etc ), the rest going for research. The research portion is going to go way higher % wise, because those others are pretty much fixed costs.

  • DG

    This is a completely misleading and immoral article. Find a better target. The ALS Foundation received top ratings by the independent organization that audits non-profits for how they use their donations. And living sufferers of this disease need assistance NOW, and not JUST through future research. I’d be ashamed that a site like infowars republished this farce of an article.

  • Chris DeVere

    This article, and headline is misleading and sensationalist. 27% goes to direct research, but 32% goes to private and public education which directly relates to either research, researchers, or the people living with the disease and the people caring for them (you have a problem with this?), and then 19% goes directly to people living with the disease (again, really? You have a problem with people living with one of the most devastating diseases getting quality of life assistance?). To me that sounds like 78% of proceeds going directly to ALS research, caregivers, and sufferers. Bravo! You make it sound like some group of shady executives are giving bare legal minimum of the proceeds and absconding with the rest to build vacation homes. Rather than the reality of an incredibly effective charitable organization managing hundreds of millions in donations and not one executive is even making a half a million (see if you can find an investment banker managing $100,000,000 who makes less than a million…). Shame on YOU, not them!

  • Jim W

    While you raise a good point, I have to call you out on the misleading headline and misleading use of data. “$95 Million Later: Only 27% Of Donations Actually Help ‘Research The Cure”.

    You make is seem as though only 27% of the $95 million will be used to “research the cure,” when in reality it is only a reflection of last years’ expenses (before the ice bucket campaign existed.) I would be interested to see how the pie chart looks at the close of their next fiscal year, so please update this article then.

    • PookahSF

      I think the article should be taken down all together for being misleading.

  • Javi

    Well, it seems very reasonable to me to split parts in research, caring for sick people, and educating professionals. Research, evidently is extremely important, but in this kind of diseases is also very important to try to help people who already have the disease by giving them services and improving their quality of living. In addition, it is crucial that doctors, and medical professionals are well educated in the disease so cases can be detected earlier, and treatments can be directed more efficiently.
    Concerning the salaries, they do seem high to me. On the other side, it is a bit simplistic the analysis, maybe higher salaries can afford more experienced and influential professionals… It could be that this 100 k more would be really cheap at the end if this chairman is able to lobby for certain policies or raise funds…
    Still, my knowledge of the disease is really low, but the article seems a bit demagogic to me.

  • Tony Nobaloney

    On a long enough timeline the survival rate for everyone drops to zero.

  • Bruce Wayne

    Don’t we already kind of know the cause of ALS? Just like Parkinson’s, Dementia, Alzheimer’s, Autism? A neuro degenerative disorder caused by neuro toxicity destroying brain cells over the course of time. Don’t we also know the cure then also? Remove all MSG, Aspartame, heavy metals, petroleum’s from water, air, diet.

    • Spike

      Batman – sorry…but we do not know what the causes of ALS are…specifically. About 10% of the cases in the US are familial – meaning that it is genetic and the person is carrying the gene that may or may not cause them to suffer this disease in their lifetime. As for the other 90%, nothing definitive to say what the cause is. That is what the research is working on.

  • dave

    Donations for cancer and many others are the same way. With over 66 billion a year coming in, very little of that goes for research. Not that it needs it, since cancer is a very preventable and curable disease.
    The thing is, donations today has become a big money making business, and they do not want to see it go away. Hence, there will be no cures, at least where modern medicine is concerned.

    • Laird Beevor

      Finally, somebody with a modicum of sanity and education…Bravo
      Dr’s Gerson and Bragg to mention just two

      • Dr. Peter Glidden

        And to mention two more: Dr. Wallach and Dr. Glidden – We both have radio shows that teach people how to reverse disease without drugs or surgery.

  • ariel

    Like every business, non profits have fixed overheads. Your pie chart shows 24 million, I’m sure with the influx of 90million+ going to this charity a higher proportion then the 27% mentioned will go to research. How much more is where the argument is, we will only really find out next year.
    I watched a TED video about charity fundraising and the point of view put across was that they should run as a business, spending money on advertising and ceos like a business would to generate higher cash flow. In this case it seems to have worked.
    Just another perspective.

    • Amelia Vargo

      I agree with you. What’s wrong with education and support? People living with this disease deserve help and support, and without educating professionals the research is useless anyway! I imagine though that the admin costs may go up as a result of this campaign so that the charity can administer the funds effectively – again I see nothing wrong with this!

  • ArbutusJ

    Too many non-profit charities direct only a small amount of their funds towards actually fighting the malady they are supposed to cure. The public is best warned to check out any organization before giving.

  • SEA

    Maybe you don’t know what the going rate is for some of those positions, but they are not all that high. Hell, I make the same amount as a couple of them and I am not a director or an executive…not even manager. It’s not cheap to higher quality employees and look at the campaign/funds they’ve brought in.

    However, I could agree that there seems to be some positions that could be consolidated. The pharmacy research is a bit disappointing and education seems like a large portion, but one of those chicken/egg things if you want support.

    • SEA

      *hire

  • BOKinLarksville

    I guess their income is more important than the cause.. Basically it’s just a job to them.. I bet if they could make the same amount of money, they would operate a factory that grinds up puppies, and feel good about it

    • Amelia Vargo

      I’m sorry but I disagree. They command high salaries but that doesn’t necessarily mean they have no morals.

  • Andy

    Anthony – I know some people who participated in the Ice Bucket Challenge. They told me that they had the option of checking a box that all the money you donated would go solely to research. Does it really all go to research? What if everyone checked that box who donated to ALS? How would they pay their employees, etc.? Just curious as to how things are run. Is there separate fund raisers for those costs?

  • mo9

    Amazing