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

http://healthimpactnews.com/2014/als-ice-bucket-challenge-do-you-know-what-you-are-supporting/ ^

[Lucky9teen]

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.

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.

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

Read more at the link

[Lucky9teen]

Good to know.

[FlingWingFlyer]

I think this is a really goofy fad. Somebody “challenges” you to donate to ALS. Then they poor a bucket of ice water on your head. Then you donate to ALS. I’m sorry but that’s some really stupid ****. Limbaugh seems to be the only one who has figured it out. If you donate, as he did, they shouldn’t be dumping ice cubes on your head because you met the challenge. Do all these goofy clips mean nobody is donating?

[RushIsMyTeddyBear]

I’m so sick of these fads. USA FOR AFRIKA and KONY.

[narses]

+

Freep-mail me to get on or off my pro-life and Catholic List:

Add me / Remove me

Please ping me to note-worthy Pro-Life or Catholic threads, or other threads of general interest.

[berdie]

I would hazard to guess that most of these folks even know what ALS is.

The ice bucket challenge is trendy and faddish...and a lot of celebs are doing it.

[Clint N. Suhks]

[ChildOfThe60s]

Bump

[Ramius]

The ALS Association was started in 1985, and they still have not invested in any new cures for ALS.

Well duh. That's because there is no cure. I don't think they even know the actual cause of the disease yet. All of the attempts at a cure have failed so far. That's how research goes. Lots and lots of failure until the right thing is found. As far as the embryonic stem cell thing goes... First I'd be slow to believe anything just because it's on the Internet. If it's true, that's a shame, but there are probably still many other ways to support research that does not use stem cells from embryos. I'm not a big fan of the gimmicky ice bucket challenge. But it's hard to argue with results. There's probably been more people learning about the disease in the last couple of weeks than there was for the last twenty years.

[omegatoo]

Our archbishop posted this about the stem-cell research problem.

*****************
Archbishop Gregory Aymond
There has been quite a stir regarding the ALS Ice Bucket Challenge.
We have received questions on this project. Many people do not realize that some of the research is done with embryonic stem cells, which is against our Pro-Life stance. However, it is possible to contribute to research that is morally acceptable. Please specify in your donations how your gift should be used. For example, the Steve Gleason Fund provides research that does not use embryonic stem cells. We have many people in the Archdiocese of New Orleans who suffer from ALS, including Fr. Ray Fitzgerald, S.J. and former Saints player, Steve Gleason. Please join me in prayer for all those who suffer from this disease and for their families.
It is possible to participate in the Ice Bucket Challenge and to do so in a way that is morally acceptable.

*****************

From what I can tell, the Steve Gleason fund is more active in funding the research and technology that helps ALS patients cope with their disabilities than in medical research.

O2

[boycott]

The ALS Association hit the lotto with this gimmick. Raises for everybody!

[FreedomStar3028]

There is a lady at work that was saying she did the ALS challenge, a really sweet 50 some year old with a southern drawl.

She said she did the ALS challenge, and I got to talking with her. I said “Hey, did you see Sarah Palin” ALS challenge?”

her: “No, I won’t watch that”
me: “Why?”
her: “I think she’s stupid”
me: *curious* “why do you think Sarah Palin is stupid”?
her: “because of the thing she said about her foreign policy”
me: *even more curious* “what foreign policy?”
her: “she said she can see Russia from her house”
me: “No, that was Tina Fey playing Sarah Palin on SNL”
her: “No, I watched her say it with my own eyes”
me: “Oh, okay”

She quickly changed the subject after emphatically stating she saw her say that, well that’s impossible. She immediately knew we would never see eye to eye on that and moved on.

[catnipman]

Everything about the ALSA in that article is a lie:

Here's the truth:

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=3296

[catnipman]

Link to the truth about ALSA:

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=3296

[Jet Jaguar]

Throw a brick at their head and make them pay.

Wait. They are doing that.

[Yaelle]

Wow, that is really sad.

I hate the Komen and other “pink” cancer funds because they go to support the cottage (nay, mansion) industry of poison and surgery only.

I definitely believe in surgery where warranted. But I believe chemotherapy will one day be seen as leeches and bloodletting are now. And I give to funds that support that kind of research, which is anti-funded. The current western oncology machine (which does do some good of course) fights against threats to other adjunctive or replacement treatments, even if they are clearly better.

I didn’t know the ALS fund was so top heavy. Insane to profit to thst extent off such sick people. And to not be more open about it.

[kelly4c]

I instinctively rebel against trends and fads. Unless of course it is something that appeals to me greatly. The ice bucket challenge is not one of them. Neither is Modern family and Breaking bad or Brazilian waxes and capri pants (floods.)

[Octar]

If you look at most "charities" you will find similar outrages with people receiving salaries well out of proportion to their worth like the Red Cross and the United Way and many others.

I only donate to two, the Salvation Army, and people I know who are in need of help.

[castlegreyskull]

Yeah, these charitable CEOs for United Way and Make a wish pull in 20-30times my paycheck. Salvation Army’s CEO gets paid much less than I do.

[surroundedbyblue]

Everything above is a lie?? So are you saying they don’t support embryonic stem cell research? Also known as the destruction o innocent human lives......

[Dixie Yooper]

Do all these goofy clips mean nobody is donating?

No, but every time ISIS pushes into a town or city and forces those who don't agree out into the desert without food or water, all we seem to be able to do is ice bucket challenges on youtube in response. The World won't remember Obama doing nothing...but we have video after video showing how much water we Americans can have fun with while others die of thirst.