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.
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.)