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

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, 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?

Shared at The Nourishing Gourmet3 Boys and a DogKelly the Kitchen Kop, and The Prairie Homestead.

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

Comments

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  1. I am from Ireland, I was diagnosed of ALS in 2006, I have tried all possible means to get cured from this deadly disease but proved abortive until i saw a post on a health forum about a spell caster who casts herbal healing spells to heal all kind of diseases including ALS, Cancer, LUPUS, HIV Aids, Ghonorrhea, Syphillis, Hepers etc, at first i doubted it but decided to give it a try when i contacted him, he helped me cast a herbal healing spell for ALS and i was totaly healed of the deadly disease within 72hours, contact this powerful healer now for cure to any kind of incurable diseases via his email

    • Hi there. Lovely to hear you are from Ireland. My father is from there. It is such a gorgeous country! I am so glad to hear that you are doing better! Sorry that I had to delete the email since I can’t vouch for what the person does and am a little concerned about “spells”. But I am sincerely glad to hear that you are doing better. Hope to hear from you again.

  2. I disagree with much of what you’ve written here, but you’re absolutely entitled to your opinion and I can see that you are trying hard to do the right thing and to educate people about what you see as the truth. Normally I would just leave it at that and see no need to comment, but I feel very strongly that I need to correct an extremely damaging fallacy in your argument #2: that ALS research likely has enough money.

    You’ve based your conclusion solely on an estimate of how much money health research scientists make and that scientists are “rich enough already”. Besides the fact that your salary estimates are about 20% exaggerated and that, even using your estimates, 100K a year to research the cure for any life-threatening disease is quite reasonable, you are COMPLETELY MISSING THE POINT. It’s not about how much an individual scientist makes, it’s about what that scientist is researching and how many scientists are researching it. Science is a very competitive field, with researchers competing for grant dollars. Due to the highly specialized nature of the research, there are often only a handful of scientists working on any given topic and they all compete for limited grant funding for that topic. By donating money to a particular kind of research (i.e. cures/treatments/prevention for ALS) you are ensuring that scientists have an opportunity to study that particular thing and you are ensuring that more scientists will study it.

    Despite your claims, there is NOT plenty of money in scientific research and the money that is available is more and more frequently coming from industrial and pharmaceutical companies or trade groups that have their own agendas. If you care about un-biased, sound research to help find cures and treatments for diseases, then you would support public funding (i.e. NIH or other federal grant money) and private donations to non-profits such as the ALSA. Many, many PhDs go into private business and do not do the kind of research that we are all hoping for because the field is so competitive and grant dollars are so limited. Just quoting the salary of a research scientists doesn’t tell you how many of those scientists there are and what they are studying.

    I truly hope you consider the damage being done by the misinformation you’ve spread and that you spend a little more time understanding this issue before posting a retraction of that point–regardless of your other opinions regarding the ALS ice bucket challenge.

    • Hi Alicia. Thanks for commenting. Did you happen to read the post that I linked to regarding the monies in scientific research? I thought that the author laid out a pretty cogent argument about the situation.

      And how did I estimate the salaries incorrectly? I am happy to correct wrongs but I thought I presented accurate information.

      Thanks much – look forward to hearing from you.

  3. Good for you for taking on a challenging topic. I too heard that ALS uses stem cells encourages/supports stem cell research. I’m not for that either.

    I enjoyed your blog. ~Sally

  4. I Just did a post on the same thing but my point was more to making a point of the waist of water and the stupidity of dumping a bucket of ice on your head. I think it would make more sense to donate to the children in Africa that can only drink a sip of water a day because they don;t have enough water system. I liked your post though some good points Sharing it 🙂

    • I agree with you. I guess we could say the same thing about our water parks and such. I don’t understand the drought in CA. They aren’t regulating water use in SoCAL while NoCAL is a mess and they are right by the ocean. Can’t we take salt out of water yet?

  5. ALS is such a serious illness, but I too sat out the ice bucket challenge for my own reasons.

    I would love to have you hop over and share with us at Inspire Us Tuesday

  6. Thank you for your well researched post. My Gramma died a terrible death from ALS when I was 6 months pregnant with my first child. It was devastating. My daughter is almost 8 now, and I often wish my Gramma was here to see my family. I have done the ice bucket challenge twice. We did it once at home, and once in front of our 2 elementary schools. In a week and a half, less than 300 kids brought in change amounting to $914. I agree that ALSA is a little sketchy, for the reasons you mentioned. However, there are other places to donate. Our money went to a local chapter that helps local families with the costs associated with suffering ALS. If all else fails, this challenge has served to spread some awareness of a horrible disease that many people still have not heard of.

    • Thanks for the kind words, Jocelyn, and I am really sorry for your situation. I am really glad for the publicity but really the underlying issues need to be addressed to get real traction here, in my humble opinion. Take care.

  7. Hi! I just stopped by from the Homestead Barn Hop and I am glad I did. I was challenged in the ALS ice water challenge and I didn’t particpate for some of the same reasons that you shared. It isn’t that I don’t feel a great deal of compassion for victims of ALS, I really do, but I can’t support embryonic stem cell research for many of the same reasons that you mentioned. I like the idea of cord blood banking or even the donation of cord blood so that the stem cells can be used for research without hurting anyone.

    I am glad to know that I am not alone in this.
    Jan

  8. I agree that people should watch what goes into their bodies heavy metal, gluten, chemicals and such. The thing you always have to remember in all studies is that correlation is not causation. There will always be the ethical debate about using embryonic stem cells in research, they have may not had much success as of yet but because they are plural potent there are vast possibilities. Also what would you suggest labs do with these left over clump of cells that a woman no longer wants. Put them on ice until someone decided to have a random child. Also a lot of your links to “research” are not credible. You have some good scientific journals but others terrible. One even cites references and then signs Dr. O. Doesn’t make for a compelling argument.

    • From all the research I did there have been no successes w/ embryonic STR. Even the liberal presses are conceding this. And the adult stem cells are now apparently becoming pluripotent. I think that the invitro procedure itself is problematic in and of itself but I chose not to “go there” in this post.

      What links do you find are not credible? Thanks much.

  9. Thank you, Adrienne, for sharing this. I didn’t know several of these facts. I haven’t done the challenge myself, yet, but my husband did. I’ll be sharing this with my FB network.

  10. Ellen Green says:

    Totally agree. I cannot donate seeing how much goes to salaries for job titles that do not even make any sense.

  11. I heartily agree with you.
    I also think a lot of scientific testing is needlessly done on animals. I do not contribute to any donations that are done by using living creatures whether it be an embryo or an animal.
    There are also many other charities that AlSA could donate their spare money to!

    Ros

  12. I struggled and prayed I would not get challenged but I did. So I did it BUT because I had already researched the ALS association and knew their financials didn’t meet my charity criteria and the stem cell research wads an issue for me also. I searched and found a small charity founded by a man with ALS that is supported completely by volunteers so the donations go 100% to help other ALS patients in need of equipment to make their lives and that of their care takers easier. My husband justv lost a childhood friend to ALS last year so it does hit close to home. I was able to do the challenge. Bring awareness to the disease and directly help ALS patients also giving a shot out to the charity I chose.

  13. Lyme’s Disease can also mimic ALS, among other diseases. See the documentary Under Our Skin.

  14. Adrienne, normally I am right there with you on issues. This time I have to disagree. If one does not choose to participate in a fundraiser such as the ALS Bucket Challenge, for health or any other reason, I fully support that choice. However, before questioning the fundraising efforts for ALS- a terrifying and incurable disease that was no where in the public eye prior to the Challenge – and the use of funds raised, look at it in comparison to what it takes to do research and find a way to help those afflicted. And please do not isolate it from other large fundraising campaigns. Please go to http://www.charitynavigator.org/ and look at organizations such as The American Cancer Society. Also, please note that the Ice Bucket Challenge was not created by any ALS research organization. Time Magazine ran an article on the origin of the Challenge. http://time.com/3136507/als-ice-bucket-challenge-started/ .

    Please understand that those affected by or who have lost loved ones to ALS, or any other awful, life-stealing, debilitating disease want awareness and funding to save others the pain they have endured. No organization is perfect, nor do most lay people understand what goes into research. Thankfully, there are watchdog groups and I encourage all to do the research into not only where each dollar goes, but why and for what purpose. It might not be as dire as you think.

    I lost my high school crush to ALS. His wife and three daughters saw him die an awful death. I pray preventive measures and cures are found for ALS and other diseases that bring so much sadness and pain into so many lives.

    • Thanks for commenting, Debbie. I hear you but what do you think about the lack of research into the things I brought up? And I didn’t say anything about the Bucket Challenge being started by ALSA – it doesn’t matter to me who started it – just where the money is going.

      I really really feel for those suffering from ALS – just more and more I am seeing how monies are being spent on the wrong things and folks are suffering needlessly as a result. I’d love to hear more about what you think about that. And glad we agree on some things :).

      • Thanks for your thoughtful response and questions – and we agree on many things!. Someone else commented that it takes a lot of funds to run a non-profit. It does. Numbers can be quoted and sound outrageously large – until put in context with similar organizations and their costs. Unless involved in an organization, one may not understand the ins and outs of the numbers, though it is easy to say they don’t make sense. Science is costly, as are good scientists! Researching the what and why of an organizations expenditures and income is very important, as is the context of the costs and income. I am reminded of home sellers who state they want to sell their home for no less than a certain price, yet they haven’t looked at comps in their neighborhood..

        I brought up that no ALS organization was the originator of the campaign, as many other non-profits are the originators of their campaigns. Due to the influx of (wonderful) funds, the organization is in the midst of figuring out how this windfall will best be used to further research into ALS. Other organizations plan their own fundraising campaigns and plan on a certain amount of income from them. We can only hope that the unexpected funds will help bring in all that is necessary (people, equipment, etc…) to more quickly find a way to stem ALS.

        Keeping abreast of information gathered by watchdog organizations will help in understanding where the monies are going and why.

        I hope I am making sense as it is after 2 a.m. and I am quite tired. Thanks again for your insightful and interesting thoughts on such a variety of topics.

        • Thanks, Debbie. I really am in a quandary about this – recognizing that it takes money to do things but seeing abuse going on and getting very frustrated by it. I used to go to a church where one of the pastors said that it was hard for him to not be tempted to stay in the ministry b/c of the salary he was paid. That’s the kind of thing that bothers me – you should be paid what you are worth but….something just doesn’t seem right to me about that kind of money that all of those high up in ALSA are getting.

  15. And while we’re talking about disease and donations, take a look at this:

    http://wp.me/pVH6I-8E

  16. Beautifully put. Well researched. Thank you. I have been ranting about the numbers–28%????–and the embryonic stem cells for weeks now. THEN I brought the ISIS question into the discussion. Have lost a couple of friends over it.
    We once worked with a non-profit. The average Christian charity only has about 15-20% overhead costs.
    This whole IBC thing has me thinking that most of the population never should have left 8th grade.
    🙂

  17. VERY well said!

  18. Kalama Hochreiter says:

    Thank you for the article and comments. If you want to help someone with ALS or their families, try donating to http://www.alsguardianangels.com. 100% of donations help those afflicted. Staff time is donated.

  19. I have a friend whose husband died recently of ALS and she said that http://www.alsguardianangels.com/ was a good organization for helping them. She also mentioned http://www.alsfamily.org/ as a helpful group. I do not know what their connection, if any, is with the ALSA.
    I appreciate your thoughts about the ice bucket challenge.

  20. Thank you for your well-researched information. I am on board with you on all accounts. Unfortunately, these drives take money from well-intentioned, generous, but uninformed people. Many other funds and drives (walk for the…..run for the……pink ribbon……etc….) collect money that likely go to things other than finding that cure! While we can be/should be generous in our giving, we have to be discerning in where that often times limited money goes. Thanks for helping open the eyes of those whose generosity may be driven by guilt.