Health Impact News Editor
The ALS Ice Bucket Challenge to raise money for the ALS Associationis 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?TheALS Associationdescribes 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 carethrough 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 leadsthe 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 forAmyotrophiclateral 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 tofund 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 theAssociation itself claimsthat only 27% of its funds go towards research.We pulled up their2013 tax returnsto 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 – $339,475.00Daniel M. Reznikov – Chief Financial Officer – $201,260.00Steve Gibson – Chief Public Policy Officer – $182,862.00Kimberly Maginnis - Chief of Care Services Officer – $160,646.00Lance Slaughter - Chief Chapter Relations and Development Officer– $152,692.00Michelle Keegan – Chief Development Officer – $178,744.00John Applegate – Association Finance Officer – $118.726.00David Moses – Director of PlannedGiving – $112,509.00Carrie Munk – Chief Communications and Marketing Officer – $142,875.00Patrick Wildman – Director of Public Policy – $112,358.00Kathi Kromer – Director of State Advocacy – $110,661.00Total 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 andthe 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 drugdexpramipexole, whichhalted 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.) Health Impact News EditorThe ALS Ice Bucket Challenge to raise money for the ALS Associationis 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?TheALS Associationdescribes 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 carethrough 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 leadsthe 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 forAmyotrophiclateral 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 tofund 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 theAssociation itself claimsthat only 27% of its funds go towards research.We pulled up their2013 tax returnsto 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 – $339,475.00Daniel M. Reznikov – Chief Financial Officer – $201,260.00Steve Gibson – Chief Public Policy Officer – $182,862.00Kimberly Maginnis - Chief of Care Services Officer – $160,646.00Lance Slaughter - Chief Chapter Relations and Development Officer– $152,692.00Michelle Keegan – Chief Development Officer – $178,744.00John Applegate – Association Finance Officer – $118.726.00David Moses – Director of PlannedGiving – $112,509.00Carrie Munk – Chief Communications and Marketing Officer – $142,875.00Patrick Wildman – Director of Public Policy – $112,358.00Kathi Kromer – Director of State Advocacy – $110,661.00Total 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 andthe 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.
( contd. http://healthimpactnews.com/2014/als-ice-bucket-challenge)

In summary this article is about how the money raised by the ALS awareness will be spent, the fact that a lot of it goes to salaries and benefits of employees and the organisation isn't really funding research for a cure.

ALS is a white man disease. it affect mainly white people. Africans should worry about more important diseases like ebola and aids that has kill many blacks

Seriously

If the money is not really spent on the research, then we better start sending the buckets of water to drought victim in Brazil etc

I just read about the #RiceBucketChallenge going on in India and I love the idea. All you got to do is to donate a bucket of rice to a needy family, take the video and share online. This seems perfect as poverty has been a major setback in the country. One for all, all for one.

Let's give the western world a break to decide what is of interest and priority to them. Finding cure for ALS isn't a terrible idea, so is the #IceBucketChallenge. Let's hope the funding raised would be used appropriately this time.

Nigeria need come up with a challenge, too.

Until the Oyinbos can actively support a black man's disease like SICKLE CELL ANAEMIA, make them no expect "ghen" from some of us.

Ochek: Until the Oyinbos can actively support a black man's disease like SICKLE CELL ANAEMIA, make them no expect "ghen" from some of us.

All the management and longevity you see among sickle cell patients is due to them. Infact they have tried. Why can't you also tell your own govt to invest in research instead of buying expensive material items like houses ans private jets! Don't blame the oyinbos, blame your black brodas in power all over Africa.

macIB:

All the management and longevity you see among sickle cell patients is due to them. Infact they have tried. Why can't you also tell your own govt to invest in research instead of buying expensive material items like houses ans private jets! Don't blame the oyinbos, blame your black brodas in power all over Africa.

Of course I am yelling all I can to ma government buh you sure know how such things can be. Especially when it looks like you are making a snail move.

Anyway, to all the SICKLE CELL HEROS out there, I respect and luv you. And to understanding health care givers, God bless you.