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

Health Impact News Editor
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.

John_Maino_performs_the_ALS_Ice_Bucket_Challenge-1024x682

Local Green Bay radio and TV personality John Maino performs the ALS Ice Bucket Challenge.

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.

ALS Association fye2014 ALS Ice Bucket Challenge: Do You Know What You Are Supporting?

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:
  • 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. (Source.)

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:
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 diseaseParkinson’sdiabetes, 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 the Deanna 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: healthimpactnews.com
Image: Source
  • wade

    I thought the primary fundraising from this ice bucket challenge was for ALS-TDI… (ALS.net) That’s where I donated… and their financials look a lot better than what is described above. (6 million of their 9 million operating budget last year was spent on research. )

  • Gretchen Kennedy

    Actually, 7% in administrative costs is EXCELLENT for a national non-profit. Ideally, administrative costs in a non-profit would never exceed 20%, and 7% is UNHEARD OF. It shows exceptional stewardship of their funds. When I was Dir. of Marketing at Meals On Wheels DE, we had only a staff of 4, and our administrative costs were 17%. Administrative costs are the bookkeeper + paid accounting firm, clinical trial managers, office supplies (thank you letters + postage), volunteer coordinators, software, database managers, etc. I’m thoroughly impressed… with ALS, not this uninformed #icebucketscam smear.

    • Erin

      If you go on to read the rest, after the pie chart, you see he explains that the pie chart was provided by the ALS administration, but that their tax returns told a different story.

  • Patrice Broderick

    Hey Gretchen, thanks so much for clarifying the financial info and finance is not my area of expertise. I have been a nurse for 40 years and am not familiar with this uninformed source called health impact news. I did plenty of my own research regarding the Catholic concern about stem cell research. They have just one active study involving embryonic stem cell research and you can opt to specify you do not want your contribution to go to that research. The rest of the why they are doing is adult stem cell research that means the patient has their own cells purified and reintroduced to their own bodies and this is approved by the Catholic church. Since I have a friend who has ALS and lives on a ventilator and is totally paralyzed, I am saddened that uninformed people are directing people away from contributing.

    • Nina

      Concerns here are that the stem cells, while certainly spinal and non-embryonic, are from aborted unborn babies. This is hideous.

      • Amanda

        Although I agree Nina it would be terrible, the truth is most research (including that done by ALS researchers) are using stem cells from umbilical cords from not only (on a rare occasion) aborted babys but also stillborn and live birth infants. Anyone with medical knowledge of both parents can donate their child’s cord blood to a public cord blood clinic where it can be used for research as well as used to make new cells for a match suffering from many diseases including cancer. Clearly the individual who posted this information didn’t do much research as there are many holes in their findings

      • Jo-Ann

        Like so many fear based articles the stem cells of aborted babies are NOT used. It is mainly from umbilical cords or adults. Way to manipulate!

  • Patrice

    Thanks for your informed input, Amanda and Jo Ann. I also like to do my own research to find out what is true from reliable verifiable sources.

  • Patrice

    I am also wondering what the author’s point was in speaking of failed clinical trials with medication. If a researcher starts a study believing he/she knows the answer, they are starting off on the wrong foot. You apparently don’t know the first thing about research. Failure occurs a lot. We learn from failure. We report failure to add to the research knowledge base. If there is any hope of saving lives of people suffering from debilitating illnesses, it is sure worth doing the research and trials.

  • Holly

    Als.net is a different organization isn’t it? Who is this unknown author? I know Als.net tested on mice and the PETA people were all upset i.e. Pamela Anderson. Would really like to know if these two associations are connected, it makes a big difference.