5 Reasons Why I Am NOT Doing the ALS Ice Bucket Challenge

The information provided in this post is for information purposes only and should not be construed as medical advice.
It is not a substitute for your doctor's care plan or advice.

5 Reasons Why I Will NOT Be Taking the ALS Ice Bucket Challenge. Will YOU?

You've seen it.

The Ice Bucket Challenge for ALS is EVERYWHERE.

Videos galore of people pouring buckets of ice water over their heads and challenging others to do the same.

The Challenge….

Within 24 hours of receiving the challenge, you have to take a video of yourself dumping a bucket of ice water on your head and donate $10 to the ALS Association —

or — you DON'T dump the bucket on your head and instead donate $100.

What is ALS anyways?

ALS is Amyotrophic lateral sclerosis, otherwise known as Lou Gehrig's Disease. It is

a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. (Source)

and Lou Gehrig was a hall-of-fame baseball player for the New York Yankees who was diagnosed with ALS in the 1930's.

Sounds pretty horrendous, doesn't it?

I'm not surprised at the outpouring of enthusiasm to do the challenge and to donate monies to ALS.org.

And it's been super successful.

They've raised $94.3 million since 7/29/14 (compared to $2.7 million during the same period in 2013).  (Source)

Wow. But I'm NOT Doing the ALS Bucket Challenge. So please don't challenge me.

Why not?

Am I a cold-hearted uncharitable person with no concern for those struggling with this horrid disease?

Read on.

5 Reasons Why I Am NOT Doing the ALS Ice Bucket Challenge

1.  Adrenal Fatigue

This is perhaps the least compelling reason, but it's the first thing I thought about when I saw folks pouring buckets of ice water on their heads since I hadn't done any research into the challenge.

I have adrenal fatigue.

And while I am doing much better these days, I still need to be careful.

What does adrenal fatigue have to do with an ice bucket?

While I was working with one of my practitioners I found myself stalling on my improvements in wintertime.

One of the things she finally said to me during a particularly rough winter was, “Make sure to stay warm as much as possible.” I had no idea at the time, but she told me that some countries use extreme temperatures to torture captives because of the stress it puts on the body.

We'd been keeping our home pretty cool in an effort to save money, but if mama ain't healthy, things don't go very well.

Here I was torturing myself in my own house :).

So up went the thermostat and on went the long johns (I actually already was wearing long johns but I bought a smaller size that kept me warmer.). Let's just say that pouring a bucket of ice water on one's head likely isn't the best for your adrenals :).

2.  ALS Research Likely Has Enough Money

I didn't know much about scientific research until I read this article, but I found it to be fascinating.

We think that when we make a donation to a charity focused on a medical condition that we are helping a cure to come about more quickly, but this author states that it likely isn't so — that the research is already happening and he makes the case that scientists are rich enough already.

Those who do get into grad school have their schooling paid, get health insurance and a stipend of $30,000 a year or more. Post-docs make significantly more and starting salary for a beginning faculty member is north of $100,000, plus a start-up package of half a mil or more to get your lab going. Science is full of rich prizes..

Actually, this all makes sense to me.

My husband is an English professor.

He goes to conferences and writes articles throughout the year (and even contributed towards an award-winning book) but rarely gets paid for any of it.

To the contrary, professors in science, business, and the like, have extra jobs and income available to them all the time. Some of them are consultants on the side and, for the most part, they are paid higher salaries in colleges than their liberal arts colleagues.

In short, scientists aren't hurting for money.

I personally come to a slightly different conclusion than the author of the previously linked article as to where I could give my monies, in that I think that throwing money after poverty isn't a real cure typically (you know, the old “teach a man to fish adage).

I would more likely give to an organization helping to eradicate the ISIS conflict or some other group that isn't involved in questionable activities and is truly lacking funds.

3.  Some of ALSA's Research is Ethically and Practically Questionable (the Stem Cell Issue)

ALSA is the ALS Association and they are the benefactors of the Ice Bucket Challenge.

One thing does concern me about supporting ALSA — that is that they are proponents of embryonic stem cell research.

I have several problems with embryonic stem cell research.

Now, before you write me off and start calling me names like “ignoramous” or “scientific neanderthal,” etc., please hear me out.

1.  Adult Stem Cell Research is MUCH more promising than Embryonic Stem Cell Research. Sources: here and here

2.  Embryonic Stem Cells have not cured anything, (source – see last paragraph) but in fact have created many problems including the genesis of tumors (source) and rejection issues (where the body rejects the implanted cells — this does NOT happen with adult stem cells since they come from the patient's own body) (source). whereas Adult Stem Cells have cured many conditions (I know this is from a pro-life site but that doesn't mean it isn't true. I try to consult and cite sources on “both sides of the aisle” in my research but sometimes I can only provide 1 as I can't find a better alternative). (source)

3.  Most Embryonic Stem Cell Research takes a human life. Note that I didn't say “all,” as there is one kind of embryonic stem cell for which this isn't the case (you can see more about that here).

If you don't agree that human life begins at conception, then I encourage you to consider the following:

– if it ISN'T a human life, then what kind of life is it?

– If the fertilization of the sperm and egg isn't the start of human life, then when does it start?  When the fertilized egg implants?  When it looks like a human?  When it is “conscious” that it is a human? When it comes out of the birth canal?

Maybe I will tackle the pro-life vs pro-choice argument in a different post (won't THAT be dicey…) but for now, let's suffice it to say that all of these arguments that state that the fertilized egg ISN'T the beginning of human life basically lean on the premise that we can arbitrarily decide when human life starts. Instead, I propose that the fertilized egg has EVERYTHING it needs to grow into a vibrant human being. And a small human being is still a human being.

On with the rest of my points.

I think it's enough to say that Embryonic Stem Cell Research is a blatant waste of money and has some serious ethical problems inherent in it.  It's been going on for a long time and has yielded zero to minimal positive results.

Shouldn't we just spend our monies on the more promising research and avoid the medical and ethical quandaries on this one?

Back to ALSA and stem cells.

ALSA states that you can earmark your donations to their organization to NOT be used for embryonic stem cell research.  They also state that at present their research is using only established lines (no new embryos are being destroyed).

However, I think that I have made the case that this kind of research is simply a waste of money.

Do you really want to support an organization that continues to walk this tightrope regarding ethical and sensible use of your hard-earned monies?

I know I don't.

4.  Most of ALS.org's Money Is NOT Going Towards Finding a Cure

See the pie chart below to see what percentage of ALSA's monies go towards research. And note the HUGE amounts of monies that those higher up in their ranks make:

  • 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

Does this mean that I think that these people should work for free? Not. At. All. But I do think that these salaries are a somewhat exorbitant for the heads of nonprofits. ALS.org spending(Source of chart: ALSA.org)

According to this source, “total costs for labor to run the association was around $12.5 million, from revenues received totaling $24 million.” (Source).

That is way too much in my humble opinion.

That means that if you donate $100 to ALSA, more than $50 of that donation goes towards salaries.  (Now, of course, they are taking in a whole bunch more moola this year due to the challenge, so that doesn't exactly work out mathematically this year, but you get the point.)

On the other hand, if you compare the salary of the head of the ALS Association ($339,475 in 2013) to that of the CEO of Komen (a total pay package in 2013 of $684,000 — YIKES!!!!), then it looks like ALSA is run with quite a tight belt.

Not tight enough, me thinks.

Where is their heart?

You know the old saying – “If you want to see where someone's heart is, just look at their checkbook.” Well, if that's true for organizations too, the ALSA's heart is only 27% in finding a cure.

5.  Little to No Focus on the REAL Issue

I think that ALS appears to be an autoimmune disease which would lead one to think that diet would play a HUGE part in mitigating the effects.

The ALS.org site states that evidence doesn't support that ALS is autoimmune (source), but numerous other sites say differently. You can read more here, here, here, and here, just to cite a few.

What I CAN say is that there is some very intriguing information linking gluten to ALS. AND there are other promising natural cures.

ALS Could Be Celiac Disease in Disguise

There is a lot of information emerging about the connection between gluten intolerance and ALS including the following:

– Physicians Found White Matter Lesions Suggestive of ALS Attributed to Celiac Disease. (Source)
– A Case of Celiac Disease Mimicking ALS in 44 year old. (Source)

If you've been around here for awhile, then you know that I think that gluten is a HUGE problem.

I am not by any means saying that all of ALS is really Celiac Disease, but I do think that, given what I am reading about ALS and autoimmune disease, going off of gluten should be one of the first things that someone with ALS should consider (and be educated on).

This article states the gluten / ALS situation very well, making the following points.

1.  A group of physicians found a strong correlation between ALS and Celiac Disease.
2.  ALS is a terminal disease with no cure.
3.  Medications being prescribed for ALS are not effective.
4.  The quality of life of those with ALS deteriorates rapidly. Patients often need 24-hour care.

Why wouldn't we be looking more at natural and dietary interventions (like going gluten-free) instead of useless and costly research and medications that kill humans?

Other Possible Causes of ALS

I wrote about my experience with heavy metal toxicity in this post.

We are exposed to toxins all the time and we need to do what we can to detoxify and promote good liver health, which is one of the reasons why I still use liquid zeolite (you can buy it from my store) almost every day.

There is mounting evidence pointing to heavy metals as a factor in ALS as well.

– ALS symptoms relived after heavy metal treatment. (Source)

– ALS and heavy metals appear to be associated in this study at Mayo Clinic.

– A man diagnosed with ALS in August of '07 is symptom-free 5 months later after detoxification therapy. (Source)

Oh, this kind of thing makes me sooo mad. Here we are dumping buckets on our head and donating money to pay folks $100,000, $200,000, $300,000, or more for research that kills babies, while the real causes are right under our noses.

Toxins and gluten are apparently 2 of the big players here.

Conclusion

I am not going to do this challenge.

Does this mean that I am looking down on those who are doing the challenge?

Not. At. All.

I think that it's honorable to want to go through physical discomfort to bless others and I think that the charitable spirit is something to be applauded.

I just think that it's important to research causes as much as possible, to look into where your money is really going –  and I am not a fan of embryonic stem cell research at all.

Does this mean I look down on those who didn't do the research?

Nope.

I've been guilty of giving to causes and later finding out that I shouldn't have.  Like the dude who ended up embezzling our monies years ago or the church we helped in its infancy that ended up dissolving under very suspicious circumstances.

I so wish I could get our money back from these folks.

I'm just trying to raise awareness about the concerns that I have about this organization, and many others like it.

In general, over the years, I've found that many of these non-profit disease-oriented groups: – overpay their staff – put too little money into finding a cure – overlook natural causes and remedies – invest in questionable research

MY Challenge to ALSA (and to you)

TO ALSA

1.  Tighten your belts and cut salaries.

2.  Direct more monies towards research, particularly nutritional and natural means.

3.  Look at the autoimmune connections to ALS.

4.  Educate people about about dietary intervention, going gluten-free, and the autoimmune paleo diet.

5.  Stop doing embryonic stem cell research. It plain doesn't work and is a huge waste of money and supports the abortion industry.

Those are my thoughts – I'm not sure how to get ALSA to do these things, but maybe if enough people contact them we can get something rolling.

Here is the Contact Form on their website: http://www.alsa.org/about-us/contact-us.html

And their phone number is 202-407-8580. I'm going to talk to them and let them know of my concerns.

Will you?

 Have you / will you take the Ice Bucket Challenge?
Do You Think My Concerns Are Valid or Over the Top?

These comments do not necessarily reflect the opinions of Whole New Mom, LLC.

Comments

    Speak Your Mind

    *

  1. I found your blog researching almond meal and PPO and have gotten sucked in because I agree with pretty much everything I’m reading here. I need to stop soon because I have little ones who will be waking me up early. Good to know about ALS. And with regard to poorly run charities- I already have Goodwill on my list of bad charities (I donate to Salvation Army instead), so I will be adding Komen and ALSA to my list not to donate too. Oh and I could type for hours about frustration with our government interfering with our freedom to parent our children the way we feel best medically but that’s another topic for another time. Glad I found your site and you now have another subscriber. 🙂

    • Thanks! I was just talking about Salvation Army vs Goodwill this week. It’s hard b/c Goodwill has great bargains but I am going to be checking out the Salvation Army myself. The other issue for me has been that the SA hasn’t been as easy to donate to. Maybe we should try again. Have you noticed that?