I think the ice bucket challenge bullshit is another classic example of bread and circuses, designed to distract the masses with shallow narcissistic displays of faux concern about an obscure disease that affects 12,000 people out of a population of 320 million. The entire campaign is nothing but a gimmick pushed by celebrities and mindlessly copied by thousands of zombies looking for attention on Facebook. It reminds me of the fags in Seinfeld forcing Kramer to wear the ribbon.
But this video is good for a laugh.
If we can learn more about ALS then along the way we might also learn more about other conditions. Besides, if you were one of the 12,000 you would care very much because this is a horrible disease.
A few (impolite) questions about the ice bucket challenge
Michael Hiltzik
Los Angeles Times
Is the ice bucket challenge the best way to decide where to put your charitable donations? No.
Americans are probably not unique in the world in treating philanthropy as a sort of game, with the goal of making it go down painlessly..
The ice bucket challenge sweeping the nation–or at least those parts of it accessible by Facebook and Twitter–is another example of how that system works. It’s a system that includes credit card companies making a Christmastime donation to a charity every time you charge a purchase, or shoe companies sending a pair to Africa every time you buy one for yourself, or your pledging some money for every mile that someone else runs or swims to support research into a disease cure.
On the surface there’s nothing wrong with any of this, since every dollar donated means one dollar more. But deeper down, there are lots of problems with it, and the ice bucket challenge illustrates why.
“The most successful charities will be those that are best at soliciting funds, not those that are best at making the world a better place.”
– British charity organizer William MacAskill, on charity stunts like the ice bucket challenge
The challenge, as you may know, benefits the ALS Association, which supports research into the degenerative condition amyotrophic lateral sclerosis, or Lou Gehrig’s disease.
As described by the association, the challenge “involves people getting doused with buckets of ice water on video, posting that video to social media, then nominating others to do the same, all in an effort to raise ALS awareness. Those who refuse to take the challenge are asked to make a donation to the ALS charity of their choice.” (The commonly suggested donation is $100.)
Plainly, there’s something of a perverse incentive here. Those pictured on Facebook or Twitter dousing themselves with ice water are ostensibly people who refused to donate.
But since dozens of celebrities have made videos of themselves getting doused–Matt Lauer, Mike Trout, Martha Stewart, etc.–we can assume that the principle has been turned around. The challenge has morphed into a device for increasing awareness and therefore fundraising for ALS research. It appears to be quite successful, since the association says it’s received $15.6 million in donations since July 29, compared with $1.8 million in the same period last year.
The first issue raised by the ice bucket challenge is whether this money is being put to its best use. That’s not a rap on the ALS Association, which appears to get good marks on philanthropic efficiency. Nor is it about whether ALS warrants this level of attention and charitable giving. It’s whether ALS warrants the attention, compared with other possible charitable causes.
Let’s stipulate that ALS is a devastating condition for those who have it. It’s almost invariably fatal, with most victims living two to five years after symptoms first appear, according to the Centers for Disease Control and Prevention. Researchers are still struggling to understand it.
But ALS is also a rare disease, which is defined by the federal Rare Diseases Act of 2002 as one affecting fewer than 200,000 patients nationwide. The CDC estimates the prevalence of ALS in the U.S. at any one time at about 12,000 persons. The ALS Association says 30,000, but hasn’t responded to my inquiry about the discrepancy.
Even taking the ALS Association figure, the prevalence of the disease is far outstripped by many other conditions that also could benefit from more research funding. These include Alzheimer’s (an estimated 5.2 million patients in the U.S.), and diabetes (25.8 million).
Stunt philanthropy like the ice bucket challenge doesn’t accommodate such distinctions and comparisons–it just feeds whatever charity hits on a catchy device and treats all causes as essentially equivalent, distinguished only by their momentary claim on public attention. The result is that “the most successful charities will be those that are best at soliciting funds, not those that are best at making the world a better place,” as the British philanthropic organizer William MacAskill puts it.
It’s a fair guess that most people prompted by ice bucket publicity to make a donation don’t know much about ALS beyond the fact that Lou Gehrig got it (maybe they know about Stephen Hawking, too). They may assume that it’s a major public health problem, though the numbers say it’s not.
That would be all right if new donations to ALS added to the total of charitable giving. But the evidence is to the contrary. One concern of philanthropy experts is that high-profile fundraising campaigns like this might cannibalize other donations–those inclined to donate $100 to charity this summer, or this year, will judge that they’ve met their social obligations by spending the money on ALS. (See this piece by MacAskill for an explanation.)
The explosive spread of the ice bucket challenge could even end up hurting ALS fundraising in the long term. The challenge is a fad, and fads by their nature burn out–the brighter they glow, the sooner they disappear.
The hard work of philanthropy always lies in creating a sustainable donor base. But the ice bucket challenge has all the hallmarks of something that will be regarded in 2015 as last year’s thing.
Even today the connection between the ice bucket videos and ALS seems tenuous–think about how many times you heard about the “ice bucket challenge” or saw the hashtag #icebucketchallenge on Twitter before you had any idea that it was associated with ALS. The ALS Association may be very pleased with its haul of donated cash this summer, but here’s betting that next year’s collections will be closer to last year’s than this year’s.
So, sure. You want to contribute to the fight against ALS, great. But if you’re doing it just because you saw or heard about Bill Gates, Jimmy Fallon, Justin Timberlake or Ethel Kennedy dumping ice water on their head, maybe you should give a bit more thought to where you donate your money.
The CEO of the ALS foundation makes $339,000 per year. How philanthropic!!!!
Enough said.
Big charity is a big scam.
ALS got $2 million last year over the same time frame they are getting $50 million this year.
What will they do with that money? Will it cure ALS?
Will it be used to give the CEO a big fat raise for coming up with a creative way to raise more money?
Will it be used to increase advertising to collect more money?
Maybe they will build a new headquarters.
Administrator says: The CEO of the ALS foundation makes $339,000 per year.
That is flat fucking criminal.
My wife worked with a guy who got/died from ALS, so we’ve done the ALS walk for the last 5-6 years or so. It’s a terrible, terrible disease that hits hard and fast. To see and talk to the families struggling with this disease is truly humbling. That said, this whole ice bucket challenge thing is some brilliantly-orchestrated and extremely annoying horseshit. Mostly because all the other big charities are now going to be coming up with their own dumbass attempts at viral social media.
I like this one:
https://www.youtube.com/watch?v=la86Dr4Nzpw&feature=youtu.be
If the ALS turned around and gave the families of the 12,000 ALS victims a $4,000 check, I’d applaud them.
Instead it will be used to make their organization bigger, hire more marketing executives, and expand their facilities.
Circus indeed.
Perhaps in an economic stimulus sort of way “we” could fund the research enough for American born STEM’s to have decent jobs with bennies.
And since printing is a suitable way to bail out the banks who got where they are due to greed and illegalities why can’t we just print up some more for disease research and help those who got there through no fault of their own.
Of course BIG PHARMA doesn’t like to share their future patents – regardless of who coughed up the research dollars ….
Only a fraction of ALS donations actually go to research
August 20, 2014 | Filed under: Politics | Posted by: Lou Colagiovanni
The Ice Bucket Challenge is based on raising money to fund research to find a cure for Amyotrophic Lateral Sclerosis, or ALS.
How does the ALS Association (ALSA) use the donations they so generously receive? The ALSA discloses in their financial documents that only 27% of the money donated to find a cure is actually used to fund research.
ALSA’s financial disclosure documents are available on their website. Initially they offer this colorful and cheerful graph:
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That’s right, only 27% of donations actually go towards research! Over $1.9 million a year goes towards paying the salaries of individuals who work for the ALSA and nearly $4 million goes towards fund raising. Meaning they spend donation money, in hopes of raising more donations!
If one wishes to break down the numbers they find this in the 2014 financial statement:
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The true amount spent on research is $7.17 million out of $26.2 million, or is it? Digging more yields more results:
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The ALSA actually only spent $6.6 million on research, and not $7.2 as they reported in their colorful graph. $292,000 went towards ‘professional fees’ and ‘contract services.’ $155,000 went towards travel expenses. Shouldn’t that money be detailed under the $1.9 million of administration?
One may also find it curious that 32% of total revenue is spent on ‘public and professional education’, or in other words raising awareness. It could be argued that raising awareness falls under the category of fundraising, as one has to be aware of the disease to donate, no? However then the graph would say 46% towards fundraising, and not 14%. The decision to report spending in this manner is by no means random.
So while the ALSA brags that they’ve raised $70 million since the inception of the Ice Bucket Challenge the public has a right to know that only around $17.5 million of that money will go towards finding a cure.
Yeah, ALS is bad. Fine and dandy. C’mon, get real, that isn’t a reasonable debate tactic. As if anyone against the ice bucket challenge is seriously on the side of ALS. “Yeah, ALS! You go, disease! Kill 12,000 more! We’re overpopulated as it is. In fact, get my neighbor, he’s a dick!”
I hate the ice bucket challenge.
First, it’s stupid. You look like a jackass pouring ice on yourself.
Second, it’s sad to see people making jackasses out of themselves and trying to make it OK because they donated money, too. You’re still a jackass.
Third, I thought real charity wasn’t about popularity, but doing what you thought was right. Well, if that’s the case, you shouldn’t need to be dared to do good. And you shouldn’t need to do good in a high-profile public manner. In fact, I thought it was a sign of class NOT to draw attention to your charitable acts, otherwise you’re really just buying attention for yourself. “Look at me! I can afford to dump my money on causes you agree with; therefore I’m a good person!”
Fourth-and I think this is really important- When you accept this stupid “dare,” aren’t you pretty much just bowing to peer pressure? Isn’t this exactly what all those lectures and After School Specials you saw as a kid were about? Don’t do drugs, just because someone else tells you to? Don’t smoke cigarettes, just cuz’ the popular kids are? Don’t steal something, just because someone said you’re a chicken if you don’t? Grow a backbone and say, “No, that sounds stupid.”
Your dad-“If your friends were all jumping off a bridge, would you?”
You-“Wait, are they putting it on facebook? Oh, shit, I’m going!”
Go ahead and give to charity, but don’t show off about it and don’t do it just cuz’ someone tries to call you out publicly. That’s using shame and embarrassment to promote a good cause, instead of relying on a person’s good conscience and genuine good intentions. Consider those nice people with the bells and the red plastic kettles every Christmas. They don’t have to use pressure to get people to donate money.
Thanks for showing just where the $$$ goes. How typical. Just one more scam for the well-intentioned sheeple
My mother has ALS. She just received her motorized wheelchair that Medicare (you) bought for her since she is now at the point she cannot walk. She has always been very independent and a hard worker (retired at 67 when she got the diagnosis) and hates asking for help and even feels a bit bad about the stuff she is getting. I just tell her that this is what it is for, and to get it while Medicare still has money.
I have not done the Ice Bucket Challenge since no one has asked me to do it (I haven’t told many of my friends about her condition) and I feel it is very silly and shallow. It feels like high school all over again with the same show-offs trying to one up each other and show how much they truly care about this disease they probably still know nothing about.
A neighbor and friend is dying from ALS, as hard as it is to watch her slowly die, these bucket challenges by celebrities and the .01% wealthy are a fucking joke.
You think they really give a shit about these people dying?
Fuck no they don’t, all they care about is they are doing the cool thing at that very moment and the media is there to record it so the stupid fucking idiots watching can nod their heads while they eat their chips, drink their six pack and idolize.
Next week it will be something new and the sheep will bleat.
Only 27% of the money raised goes to research?
I may never donate a dime again, to any charity. Sad.
“The CEO of the ALS foundation makes $339,000 per year. How philanthropic!!!!”
Only 27% goes to research and the CEO rakes in 1/6th of all admin costs! This is exactly why I others like llpoh do not donate to human charities. So many of these charities are a big scam.
I noticed the same thing admin noticed. The whole section about public and professional education sounds ridiculous. First, because no professional in the medical field that has to deal with these patients needs to be educated about it. Second, what the fuck can the public do, other than give money to them, about a disease that not even the researchers know how that much about or what to do about it.
All these awareness campaigns are mostly a load of shit to get people to give money. They are mostly empty propaganda.