ALS Ice Bucket Challenge: Do You Know What You Are Supporting?

Aug 20, 2009
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ALS Ice Bucket Challenge: Do You Know What You Are Supporting?

August 23rd, 2014

(HealthImpactNewsDaily) - The ALS Ice Bucket Challenge to raise money for the ALS Association is sweeping the nation, and going viral in social media. However, do you know what you are supporting if you contribute funds to the ALS Association?

The ALS Association describes their “mission”:

Established in 1985, The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

As the preeminent ALS organization, The Association leads the way in research, care services, public education, and public policy — giving help and hope to those facing the disease. The Association’s nationwide network of chapters provides comprehensive patient services and support to the ALS community. (Source.)

ALS is the acronym for Amyotrophic lateral sclerosis, commonly known as “Lou Gehrig’s Disease.” Media portrayals of the Ice Bucket Challenge generally state that ALS “is always fatal and has no known cure,” and therefore urge people to contribute to the ALS Association to fund research to find a cure.

Where Does the Money Contributed to the ALS Association Go?

So where does the money donated to the ALS Association actually go? You may be surprised to find out that the Association itself claims that only 27% of its funds go towards research.
Financial Information - The ALS Association

ALS-Association-fye2014.jpg

We pulled 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 group:
http://www.alsa.org/assets/pdfs/form-20990-20-20f2014-20irs-20sgd-2006-11-2014.pdf

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” (Part IX line 7) 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.

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:

Explanation: 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.
Biogen Ends Development of ALS Drug - WSJ

If You Are Pro-life, You Are Supporting Research in Stem-Cells from Aborted Fetuses for ALS

The ALS Foundation’s primary work in “research” is in the development of new pharmaceutical drugs, and that includes stem cell research. Here is one study where they have been listed as a sponsor: A Phase I, Open-label, First-in-human Feasibility and Safety Study of Human Spinal Cord derived Neural Stem Cell Transplantation for the Treatment of Amyotrophic Lateral Sclerosis. Quote:
Stem Cells - The ALS Association
ALS Clinical Trials | ALS Clinical Research | The Northeast ALS Consortium (NEALS)

These stem cells have been engineered from the spinal cord of a single fetus electively aborted after eight weeks of gestation. The tissue was obtained with the mother’s consent.

When we make a contribution to a charity, typically we want to know that the particular charity reflects our own values, so this will be important information for many people.
Are There non-Drug Alternatives for ALS Treatment?

Yes! However, you are not likely to read anything about this from a non-profit charitable organization supporting the pharmaceutical industry. We have previously reported the story of Clarence and his experience in using coconut oil: Coconut Oil Reverses Amyotrophic Lateral Sclerosis (ALS).

Coconut oil can be used in a strict ketogenic diet that has been shown to be successful in treating Alzheimer’s disease, Parkinson’s, diabetes, and cancer. among others. The principles of the ketogenic diet are completely different from the philosophy that the pharmaceutical companies start from in their research, where the assumption is that ALS is a “genetic disease.” Most of the current research on fighting disease with a ketogenic diet starts out with the assumption that modern diseases are primarily metabolic, and not genetic, caused by such things as poor diet, toxins in our food and environment, etc.

Another non-drug approach currently seeing success with those suffering from ALS is theDeanna Protocol. This nutritional protocol has seen great success among many users, but I could find no information on any research being done on it by the ALS Association, sadly.

Charities and fun activities like the ALS Ice Bucket Challenge can often give us a feeling of contributing to something very helpful and worthwhile, but it is always wise to research any charity first. Examining their tax returns is one good way to find out where their money is actually being spent.

Source: Health Impact News
ALS Ice Bucket Challenge: Do You Know What You Are Supporting? | Health Impact News
 

Terry Soloman

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A drop in the "bucket" compared to the various Cancer charities in this Country. If they cured cancer tomorrow, how many people would be out of a job?
 

BigWaveDave

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I would like to pour ice water on your thread.
 

Peyton Manning

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are they hiring in leadership?
 

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are they hiring in leadership?

:dontknow:no idea.Seems to me that theyre all making nice salaries( I wouldnt whine if I were making 100 grand a year:laughing7: )at the expense of suckers giving them money,hell,everybody send me a hundred bucks and I'll give half to the charity of your choice.Why not?Its the same thing.
 

Peyton Manning

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a hundy a year would be nice

I think most charities are ripoffs, but what do I know?
 

Number9

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A drop in the "bucket" compared to the various Cancer charities in this Country. If they cured cancer tomorrow, how many people would be out of a job?

Terry... You hit a home run with that statement!! Most doctors and big pharmaceutical companies are in the business of treatments.. not cures! And many charities are nothing more than a business to make money with few dollars going into research!

Would you like to read what I found on the National Institutes of Health website about ALS?

"Significant advances have increased our understanding of the molecular mechanisms of amyotrophic lateral sclerosis (ALS), yet this has not translated into any greatly effective therapies. It appears that a number of abnormal physiological processes occur simultaneously in this devastating disease. Ideally, a multidrug regimen, including glutamate antagonists, antioxidants, a centrally acting anti-inflammatory agent, microglial cell modulators (including tumor necrosis factor alpha [TNF-alpha] inhibitors), an antiapoptotic agent, 1 or more neurotrophic growth factors, and a mitochondrial function-enhancing agent would be required to comprehensively address the known pathophysiology of ALS. Remarkably, cannabis appears to have activity in all of those areas. Preclinical data indicate that cannabis has powerful antioxidative, anti-inflammatory, and neuroprotective effects. In the G93A-SOD1 ALS mouse, this has translated to prolonged neuronal cell survival, delayed onset, and slower progression of the disease. Cannabis also has properties applicable to symptom management of ALS, including analgesia, muscle relaxation, bronchodilation, saliva reduction, appetite stimulation, and sleep induction. With respect to the treatment of ALS, from both a disease modifying and symptom management viewpoint, clinical trials with cannabis are the next logical step. Based on the currently available scientific data, it is reasonable to think that cannabis might significantly slow the progression of ALS, potentially extending life expectancy and substantially reducing the overall burden of the disease."

Remember.. this is the same government that has cannabis as a Schedule 1 drug.. No prescriptions may be written for Schedule I substances, because it has no currently accepted medical treatment use in the U.S.
 

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