fishinvol - 8/27/2014 2:07 PM
I gladly did it and donated what I could to a local family who is dealing with it. Now, anyone that is over it , I get it. It gets tiresome seeing all the videos, but it's obviously worked. If there are copycats and it works for those diseases, that's great too. I have a family member with a disease and I hope beyond hope there is a copycat that raises money and awareness for her disease, because I think it's over looked in a big way especially in our general area. Weather in the public eye or not.
Chris, that is what we should all do, donate to a family in need. These foundations and charities are as greedy as they come. Here is some food for thought.
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.)