The ALS Ice Bucket Challenge to raise money for the ALS Association has become the cool and trendy thing to do as of late. It has been a viral sensation for going on 2 months. All under the guise of “raising awareness” for ALS.
Well, ask yourself honestly right now….do you know WHAT ALS stands for? Do you know how ALS presents itself in the human body?
If you can not effectively answer those two simple question and you have dumped the ice bucket on your head, then this pop culture trend is a big fat failure. And you have become a “bucket head”!
After watching the spectacle that has unfolded over the last couple months, I wanted to offer some sober grounding as how seemingly good natured support actually may contribute to already broken systems and rob society of where greater focus should be centered.
Amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) is simply the proverbial social media soup de jour. Not because it’s the most important medical problem today, but because it’s got a clever bit of marketing that got lucky and went viral.
Bravo! to the ALS Association’s ad campaign manager. The ice bucket gimmick has nothing to do with ALS—you could ice-bucket lung cancer just as logically. But hey, maybe more so, in fact, given most people’s physiological response to a bucket of ice water takes their breath away. But regardless, for whatever reasons, it has worked brilliantly.
Make no mistake about it, I’m not dumping water on my head and I’m not writing the ALS Association a check. To be quite frank, giving money to biomedical research is like giving Bill Gates money for jet fuel. I’m going to share with you some heavy truth bombs as to why I know that to be true.
Now before getting all in an uproar, let me acknowledge that there undoubtedly will be a segment of people who could be offended by this article’s position, so before I make my case, here is some personal insight.
Meet my Grandmother:
My grandmother Mary Adell Remington Gibbs was taken from me and my family going on almost 30 years ago by ALS. I’m sure like most of us, we thought our grandma made the best grub ever! Mine actually got me to like fish. She made these fried salmon patties that stunk up the house but man were they yummy. She also used Irish Spring soap, which I loved the smell of as a kid.
On a more somber reflection, I also remember the commonly seen sudden onset of ALS and its rapid deterioration of the body. It’s a sad and tragic thing to witness for sure.
She was the loving and caring mother of my step-father, Steve.
Incidentally, he was a victim of Polio as a child. He was even the literal poster child for the March of Dimes back in that day. Seen here with the nurse at Duke Hospital in my home State of North Carolina. So the irony was to have been a victim of a neurodegenerative disease and then have to see his mother fall to yet another one.
So my point is, I have a personal first hand relationship to the disease known as ALS. I of all people certainly want actions taken to find resolution to this disease. Notice I didn’t say I wanted to “raise awareness”, I want action taken to PREVENT and/or implement a cure. There is a huge difference. But more on that later.
Even past that part of my life, is the fact my entire life’s work, study and career has been and remains dedicated to the understanding the resolution of chronic degenerative disease such as ALS. Hence, the selection of my medical specialty of Functional Medicine.
This has afforded me a tremendous amount of study into things such as but not limited to genetics, environmental influences on disease, biomedical research and systems biology. I have platformed this study to include looking at the context of the study of disease through history, where its origins come from and in the context of contemporary society and culture behaviors.
Now having said that, I can comfortably say that we’ve been duped. It is true that America is filled with fun-loving and caring people. However, the viral ice bucket challenge has downgraded our sense of responsibility to our fellow human to a one time display of fun. And judging by the smiles of countless video clips posted on Facebook and YouTube, it has been fun!
That’s right, it’s for FUN. Not “raising awareness”. Simply take an honest look for yourself with a quick search on YouTube. Here are a couple examples:
TV Actor Chris Pratt
Popular Rapper Macklemore
Ask yourself honestly….do really think these people are moving the hearts of their audience to take actions conducive to bring about cures to this disease?
But wait, let’s look at some multi-billionaires like Microsoft founder, Bill Gates or FaceBook founder Mark Zuckerberg, who challenged him. They most certainly will give more credibility and respect to such an admirable trend…right?
But here’s the thing, people like Bill Gates and Mark Zuckerberg and the VAST amount of who I affectionately call “bucket heads”, who participated in this trendy virtual party didn’t even use ice. They simply poured water on their heads. Maybe they are proving one of my points, in that the challenge lost its soul from the beginning because it became more about the pouring of something on ones head for the fun it, as opposed to the attention to the disease. So now this charade has inadvertently become the water bucket show. It certainly has NOT created a wealth of informed and educated populous as to this awful disease.
Click here to check out some bucket heads to prove my points.
What is completely ironic is that Bill Gates did a huge mini movie production and set building only to one up everyone. Talk about a lost opportunity to share some powerful insight. This is a perfect example of a whole bunch of effort squandered on a display of a party trick to simply appease ones narcissistic fix. Now if Bill Gates would have pledged to have matched dollar for dollar every dollar donated, then THAT my friends would have been impressive.
On top of all this, it took over a month for people to even find out what this whole dumping buckets of ice on ones head was all about. This was because most of its participants, like the Today Show host Matt Lauer, didn’t even mention the disease at all. Matter of fact, he mentioned a completely DIFFERENT charity!
I rarely heard people say, “If you don’t accept this challenge, you have to donate! You’ve got 24 hours.” But even if they do accept, why was it a challenge of take an ice dump OR donate. Why was the message not a resounding DO BOTH?
Now, I know, Ice Bucket defenders will argue this is all just meant to “raise awareness,” meaning those who participate are still doing good without donating. ALS needs awareness sure, but somehow I doubt many learned a whole lot from contextless tweets of wet celebs smiling and laughing.
Personally, I can’t help but feel this challenge could have done so much moregood if it were structured differently. Maybe people could dump ice water on friends who haven’t donated as a goofy way of encouraging others to give, or dump ice water on themselves before promising to donate and calling on people to even visit the ALS Association website.
But wait! Ice Bucket Challenge donations are nearing $100 MILLION. Isn’t that a good thing?
Well, have you asked yourself…..Where is that money going?
Let’s take a look shall we?
According to the ALS Association:
“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 people think they are donating for. Bomb! Talk about a truth bomb!
Here are some more…
You can pull up their 2013 tax returns to take a closer look at how their funds are spent. Here are the salaries for the leadership of the ALS Association:
- 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
Total administration costs, as seen in the pie chart above, were just under $2 million. “Other salaries and wages” were $3.6 million, with another half million dollars in “pension plans” and “employee benefits.” Expenses for non-employee labor were about $4 million, and “travel expenses” exceeded $1.3 million.
So total costs for labor to run the association was around $12.5 million, from revenues received totaling $24 million.
Did you get that math? Ever see that spoken of by any bucket head?
Over 50% of what the ALS Association receives appears to support salaries of people working for the Association, based on these tax returns.
So what about the rest of the revenue?
Almost $1 million was spent on “Lobbying” (Schedule C Part II 2a). Here is what they wrote concerning their Lobbying efforts:
“The purpose of our advocacy program is to sensitize legislators to, and obtain their sympathy for, the plight of ALS victims, patients and their families, and to influence legislation regarding the appropriation of federal funds for ALS research and the use and cost to patients of “orphan” drugs.”
The largest amount of what is remaining is: “Grants and other assistance to governments and organizations in the United States” (Part IX line 1) – $6.2 million. This amount is itemized on Schedule 1. Almost all of these recipients are medical schools, with strong ties to the pharmaceutical industry.
The ALS Association was started in 1985, and they still have not invested in any new cures for ALS. One of the latest failures was Biogen’s drug dexpramipexole, which halted research in early 2013. The drug was in research for more than 10 years at an estimated cost of between $75 million and $100 million, but was abandoned in last stage development due to poor results.
Looks like ALS Association has modeled themselves after the U.S. Federal Government and their approach to financial stewardship. But, I won’t go on about that.
Shocking? I think so too! The question is, do you think this money is being used where it could have the best impact?
If you do, then throw money at it. If you don’t then SHARE this article.
So at no surprise, I am not going to do this challenge and I encourage everyone to take to heart that which I am sharing here.
Does this mean that I am looking down on those who are doing the challenge?
Let me put it this way…
Rest assured, even a fool recognizes there is great sadness in a bucket of tears. But only a wise person thinks to conserve water and use that bucket to pour that water on something that could use it to grow!
I think that it’s honorable to want to experience a little physical discomfort with intent to bless others and I think that the charitable spirit is something to be applauded and I have always advocated for such things.
I simply want people to honestly understand that it’s important to research causes as much as possible, to look into where your money is really going. We must hold them out to hold the highest standards of all. This is because I know that those who give charity are pulling from deep down in their hearts to give and that is to be cherished with respect and proper stewardship by those who administer that receiving charity.
Thought I do NOT feel the ALS Association is a scam charity or nefarious, I do feel they are an example of charity gone wrong and who has lost its way on what is most important and how they should manage their stewardship.
As for “raising awareness”, few of the videos I’ve seen contain any substantive information about the disease, why the money is needed, or how it will be used. More than anything else, the bucket head videos feel like an exercise in raising awareness of one’s own cooliness, need to be silly for some kids, altruism, and/or attractiveness in a wet T-shirt. It should NOT be about, “Hey, look at me! Aren’t I cool like all the others? Do you believe I care about ALS now”?
People watch these videos and don’t know anything more about ALS then they did before the people in them got wet and cold. How about telling me where and how we can donate or spend something more valuable, our time? How about even including a crummy link with the video for crying out loud? Something, anything about the disease itself.
Before you think I am get you downer, cynical or a party pooper, please understand that I am fiercely and lovingly dedicated to helping people prevent disease. This ice bucket challenge is NOT going to do that. Matter of fact, I believe it will do just the opposite.
I find that it will follow the time proven pattern in human medical sociology. This is that people do this one seemingly meaningful thing and that somehow quenches any further need of involvement. Because after all….hey they just poured ice cold water on themselves for the whole world to see. Right?
Giving money “to ALS” feels good, but what does it actually buy those with ALS? Say a scientist has a gene or a protein and they think it’s the best thing since ice machines. But to work on it, they need money. So they flip through the grant opportunities and find a disease they can attempt to plausibly link to. Let’s say it’s ALS. They dress up their little geeky research project in a tuxedo and bow tie, with some shinny shoes, hits “Submit” on the NIH website and sits back and waits for half a year for their funding score.
The budget cuts mean that the funding cut-off moves down a few points, say from 25 to 20. Their application has to be in the top quintile to win. The ice bucket money though, means they can apply to the ALS Association and have a better chance. It effectively raises the cut-off again, back to 25 or even 30. That’s the impact of all this feel-good pop charity. That’s it…a few percentage points on the funding cut-off.
But again, what are they going to research? Well I can tell you it won’t be any genetic influence or epigenetic factors.
Why, because I’m fixing to tell you another little known truth bomb! Wait for it…..
VERY little IF any real research has been or will be done on genetic components of our top chronic degenerative diseases because they legally can’t! This is because of the fact that most do not know that the U.S. Patent office issued patients on over 20% of human genes. You got it, YOUR genes are not owned by you. They are owned by various corporations.
The show 60 Minutes did a great show on it which you can find here
National Geographic did a wonderful job at reporting on this almost a decade ago here
The documentary Patently A Problem shows the dirt money business that fuels it here
What research ultimately is relegated to is looking for pharmaceutical compounds, which will be patented as well, to suppress symptoms and used are “treatment” NOT to cure and NOT to improve the lives of those afflicted.
But, I digress.
I am not bashful to share that I am skeptical of campaigns where the main focus is to “raise awareness.” In this case, I’m not sure how raising awareness is actively helping people who suffer from ALS. Does pouring a bucket of ice water over your head get us any closer to finding a cure?
Unless this translates into some sort of donation or perhaps volunteering your time, it’s hard to see how this aids in enacting any changes.
What it does do is help those participating feel good about themselves and how cool they are looking while doing it. I know personally that ALS is a terrible disease and I’m not suggesting that raising awareness is entirely unnecessary. I simply feel this is not really the best way to go about it. There is absolutely no real information being put forth by the Ice Bucket Challenge. People walk away from these videos not knowing anything more about ALS other than that it exists. Too bad they didn’t watch the video stories of those suffering of living with ALS. Oh wait, there are none.
Ask yourself or anyone you know who was a bucket head these questions…
- What does ALS stand for?
- What IS ALS?
- How does it effect a persons body?
- What happens symptomatically to people with ALS?
- How many people are diagnosed each year?
Not one person I’ve asked has had the answer to any of those. This is unfortunate proof positive of the point of this article. The whole idea is to “raise awareness”, but what I am finding is that those who are partaking of the challenge don’t know any more about it even after they dumped a bucket of water on themselves.
So since my point is to not just call out this silly campaign but to Educate, Motivate & Inspire let me break this down for you!
ALS stands for “Amyotrophic Lateral Sclerosis” or affectionately named after a former Major League baseball great and hence referred to as “Lou Gehrig’s Disease”. It is a degenerative disorder of the central nervous system that leads to weakening and wasting of the muscles. Not just the muscles attached to our bones, but those that concern the function of our internal organs. This disease has a very rapid progression and most don’t live beyond 5 years after initial symptoms and diagnosis.
A-myo-trophic comes from the Greek, “A” means no or negative. “Myo” refers to muscle, and “Trophic” means nourishment…so thus, “No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (“sclerosis”) in the region.
Pharmaceutical companies produce some pretty amazing drugs that do some pretty amazing, life-saving and incredible things, and we need many of the products they have to offer. This world is a better place because of many of these drugs.
However, they are also motivated by one very powerful ideal; to make a profit. It is not my intent to get into a debate, but finding a cure for a disease that already has drugs that make them a lot of money would go against the idea of making a profit. Cures are not good for the pharmaceutical industry, treating and managing disease with expensive drugs is.
With some diseases, like cancer, we are still using the same chemotherapy drugs that we were with little or no better results for the past 60 years. With all our modern advancements, is this really the best that can be done? Raising money may help this cause, but I choose to do more than raise awareness through other more productive means, and buy making calls to action.
If you decide to donate to charity, may I humbly suggest that you select a well-researched charity (on your own, no endorsements here) and
1. Verify where they are spending the monies received.
2. Send them a check but get physically involved where you can.
3. Inquire as to what ACTIONS you may take to help them beyond donating money.
Here’s a gift from me to you…
If you want to know more about how to go about this, I’d like to give gift you a book I wrote… (download it here or read it below)
Below Are My 10 Reasons Why I think the ice bucket challenge is COLD and SHALLOW!
- ALS is just another name it, blame it, tame it game. Where the approach is to give it a fancy name like “Lou Gehrig’s disease”, blame the causes to something mysterious and that we have no known causes for, and then approach to intervention only being that of “raising awareness” and not truly seeking answers to causation.
- “Awareness” is NEVER a solution. And no….it does not lead to solution. “Awareness” more times than not, plays the role of the poor fool who needed something to quench the thirst of universal guilt.
- All the dysfunctional systems in the body that manifest collectively as said named disease, can all be the same symptoms in other person, yet not manifesting as so called ALS. The focus must be on the unique genetic and biochemical individuality of the person who has systems that are dysfunctioning.
- I saw my grandma die of ALS almost 30 yrs ago. The incidence of ALS is virtually the same now as it was then. 2 people per 100,000 per year in the US. This country has bigger problems that should get far more attention and actions taken. ALS Association has plenty of money to fund research if they stop stealing the money for their own pockets.
- It is unfortunate that diseases such as ALS are relegated to viral shallowness as replies to be as fun as someone else was. They have there day and are gone as quickly as they came. In just a couple months no one will ever hear about ALS again and the ice bucket heads will fade to the annals of social media pop culture. Only to be recounted at some future VMA Awards show time capsule.
- The narrative to chronic degenerative disease will always continue to be that of “raise awareness” and “ice buckets”. Until we eject the current medical model that is rooted in an acute care approach to chronic disease, this will continue and no actions will be taken to truly resolve chronic degenerative diseases.
- These internet trends are not inspiring to me in the least. They make my heart heavy. They simply reveal the people who miss the need for greater investments of time, talent and love. Just like that crap with holding up the signs for those precious girls in Africa kidnapped by evil terrorist men. So a bunch of famous people held up signs and took a picture….now what? Was any action taken, any quantification of effort revealed?……well of course not. Nothing will come of this either. Ouch, stings a little don’t it.
- ALS is NOTHING compared to what really kills people in this country. CVD, Cancer etc. Which are known to be 85% preventable across all population segments. And guess what? People are under the impression that breast cancer in women kills most of them because of another campaign that gets people to wear pink….its doesn’t….you know what does? Fractures related to Osteoporosis. 4000 per 100,000 per year. See what happens when you dress up problems and put pretty pink ribbons on things? It clouds and overshadows the truth of the state of affairs.
- By their own admission, the ALS Association squanders the VAST majority of there donations on what I showed above. Only 27% goes toward research and EVEN LESS goes to patient services at 19%. Meanwhile, there board of directors collectively takes in MILLIONS into their pockets for salaries to oversee this debacle of supposed disease care and research.
- So you won’t find Dr. AGB wearing pink ribbons, or dumping ice on his head. Instead…you find him back in the breech of education yet again completing a Doctorate of Health Sciences in Integrative Health Care with concentration in Epidemiology of Chronic Disease. Why? to dedicate his life deeper than ever before to enlightening the world to the truth about chronic diseases like CVD, Diabetes, Cancer, and ALS. So people should be taking greater action than spilling some cold water. Making a attention getting video is NOT taking action.
If you think is is an isolated problem then you may want to grab a seat and brace yourself! The whole charity realm has become infected by all sorts of inappropriate tactics and lack of over site. Here is a very sobering and revealing look at Americas Worst Charities.
My Challenge to You:
1. Before you ever participate in a charity campaign or donate, do YOUR homework. Find out where the money goes.
2. Get educated on the purpose and mission of your selected charity. Know what you are representing.
3. Realize that being “aware” will never replace taking “action”. Get involved by donating your time and voice beyond just a video.
My Challenge to the ALS Association:
1. Direct more funds to patient and community services. Programs that will assist families who bare the burdens of taking care of their loved ones stricken with ALS.
2. Tighten your belts and cut salaries. You corporate structure and compensation plans are embarrassingly negligent and grossly inflated.
3. Direct monies towards research of environmental contributors to ALS such as biological toxins and autoimmune disease inducing dietary contributors.
Those are my thoughts. I’m not sure how to get the ALS Association to do these things, but maybe if enough people contact them we can get something rolling. But it starts with talking about the truth of things and not subjugating oneself to the modes of pop culture.
Let this “raised awareness” cause you to take action by taking control of your own health by doing what is necessary to be healthy now and not wait until when you have health problems, symptoms or a disease. We have a health crisis in this country today and it is centered in PREVENTABLE chronic disease.
Find a Functional Medicine practitioner who actually recognized the multifaceted web of inner connective contributions to chronic degenerative disease and help you develop personalize strategies based on your own biochemical uniqueness.
Here is your last call to action…..SHARE THIS ARTICLE. If you see it posted, CLICK SHARE! Don’t stop at just liking it. Let’s free some minds and bring about change, not settle for just “awareness”
Let’s Live Life in Balance!