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ALS Ice Bucket Challenge Funding Leads To New Genetic Findings (yahoo.com)
An anonymous reader writes: Researchers are crediting the ALS Ice Bucket Challenge, a fundraiser for amyotrophic lateral sclerosis that went viral in 2014, for funding a new study that has possibly identified a common gene that contributes to the nervous system disease. Yahoo reports via Good Morning America: "In a study published in The Nature Genetics Journal, researchers from various institutions, including the University of Massachusetts Medical School and the University Medical Center Utrecht, identified the gene NEK1 as a common gene that could have an impact on who develops the disease. Variants of the gene appear to lead to increased risk of developing ALS, according to preliminary findings. Researchers in 11 countries studied 1,000 families in which a family member developed ALS and conducted a genome-wide search for any signs that a gene could be leading to increased ALS risk. After identifying the NEK1 gene, they also analyzed 13,000 individuals who had developed ALS despite no family history and found they had variants in that same gene, again linking that gene with increased ALS risk. Starting in the summer of 2014, the ALS Ice Bucket Challenge led to 17 million videos made and $220 million raised, according to the ALS Association -- $115 million of which went to the association."
The marketing agency that launched the campaign was proud to report that their campaign met all performance metrics ...oh the money actually helped someone? Great!
to fight Zika
No worries. You can just suck a couple extra dicks behind the Starbucks every night to afford it.
Good cause & a fun way to raise money. Both my wife & I did. She sprang up on her feet a split second after I started to dump the ice water on her. One of the funniest things I've seen! :-D
Taking guns away from the 99% gives the 1% 100% of the power.
$220 million raised.
$115 million went to the association.
Did the fundraisers take the other half of the money?
from my understanding fundraisers can legally take up to 60% of all donations to cover costs and expenses, so make sense theyonyl get about 1/2
It's not a typo if you understood the meaning!
Yahoo reports via Good Morning America: "In a study published in The Nature Genetics Journal,
How about a quote directly from those involved in the study. I've seen Yahoo and I've watched GMA and who knows how many time telephone got screwed up in that news path.
who got new houses and cars then? 50% of money evaporated like water?
$220M is the global total amount. There are multiple ALS organizations in different countries. $115M is only the amount the US ALS organization received, and it is all accounted for here http://www.alsa.org/fight-als/... , fundraising and transaction processing costs were only 4%. It does appear this charity is one of the good ones that doesn't spend all its money on itself.
I spent about fifteen years of my career in the non-profit sector, so I have some perspective on this.
Raising money in a non-profit is just like selling stuff is for a for-profit. Generating gross revenue is relatively easy -- if you spend a lot of money you can rake in a lot of dough. What's a bitch to generate is net profit. In the non-profit sector we don't use the term "profitability" very much, so the metric that's often used to describe financial is "cost to raise a dollar." For typical fundraising activities cost-to-raise-a-dollar runs from 0.25 to 1.5 dollars/dollar.
Take junk mail. The cost to raise a dollar for a well-run direct mail campaign is in the range of $1.25 to $1.50, so if I want to raise $115,000 to spend on other things I have to scale my direct mail campaign to bring inover $258,000 gross. As you can see I chose a net target that was exactly 1/1000 the size of the ALS bucket challenge net, so you can compare the efficiency of the processes readily. The cost to raise a dollar for the ALS bucket challenge is actually better than a well-run direct mail campaign -- $0.91.
And it should be more efficient than direct mail, because direct mail is about the least efficient method there is. The marginal costs are huge because you pay for the names and addresses as well as printing and mailing of each piece, and most of those pieces will end up in the landfill unopened. So if direct mail is so inefficient, why use it? Because the financial inefficiency doesn't matter to the organization doing the fundraising. The end result of my hypothetical direct mail campaign is that my organization has $115,000 it didn't have before. That probably pays for one and half full time staff positions (at the low do-gooder wages we pay) for a year.
So the ALS challenge was in the financial efficiency range of methods normally used by non-profits, albeit a little towards the inefficient end. That doesn't really tell us if the campaign was responsibly run or not; to know that you'd have to look at all the expenses and compare those to costs in other viral Internet fundraising campaigns. But the bottom line is that the ALS association ended up with $115 million it didn't have before.
Can you think of a way of raising $115 million in a few months? I thought not. So presuming the guys who ran the campaign didn't spend the money on hookers and blow, I wouldn't be unduly concerned by a cost-to-raise-a-dollar of $0.91 if I was on the board.
Should donors care that the ALS challenge was a little high on the cost-to-raise-a-dollar metric? Well, I look at it this way. People did it because it was fun and for a good cause, and two years later we can point to concrete and significant scientific results from the money raised. That's not only pretty good, it's pretty damned awesome.
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going to help Stephen Hawking get better?
Nope
and its certaunly not going to help Lou Gehrig
Why were they only raising money for ALS that went viral in 2014? I mean, the fact that it's gone viral is huge news, and terrifying. But it would be good to know if the cures can be used on older non-viral cases, and if not, why?>
So 17 million videos of a person being dumped upon with ice water generated 220 million dollars for an average funds raised of $12.94 per dump. But wait! The fund raising organization kept almost half of the take so ALS research got about $6.76 per ice water dump. And if the video makers bought the ice instead of making it themselves the economics looks even worst.
My comment above is not meant to conflict with the prior comment posted by by hey. His comment is informative, well written and makes a valid point.
People did it because it was fun and for a good cause, and two years later we can point to concrete and significant scientific results from the money raised. That's not only pretty good, it's pretty damned awesome.
Downright spectacular, I would think. How many thousands of cancer fundraisers have their been, with precious little to show for it?
Maybe they should start having anti-cancer fundraisers...
Project MinE started a year before the Ice Bucket Challenge and the money provided to the project that was the direct result of the challenge is a fraction of what it's raised outside of the project.
To suggest the Ice Bucket Challenge funding was directly responsible for the results completely ignores how the funding of these kind of scientific endeavours really works.
Wait a minute... Wouldn't they be better off not spending the $1.25 - $1.50 it takes to raise a net $1? They can spend that directly on the staff positions and what-not. Am I missing something here?
"Should donors care that the ALS challenge was a little high on the cost-to-raise-a-dollar metric? Well, I look at it this way. People did it because it was fun and for a good cause, and two years later we can point to concrete and significant scientific results from the money raised. That's not only pretty good, it's pretty damned awesome."
Don't let the otherwise informative post persuade you, donors should always care about the overhead costs of the charities they support. Just because an activity is "fun" does not excuse it from excesses and wastefulness. If people truly want to make a difference they should expect efforts be applied to progress, not enrichment.
Wait a minute... Wouldn't they be better off not spending the $1.25 - $1.50 it takes to raise a net $1? They can spend that directly on the staff positions and what-not. Am I missing something here?
Yes, you are missing pretty much everything. If $1.50 goes out and $2.50 comes in, you net $1.00. If you just spend the $1.50, you net -$1.50.
True, donors should be concerned -- but they need to exercise that concern in the context of comparable activities.
It's hard to raise a hundred million bucks. Hard == expensive == less efficient. So efficiency is a concern, but it shouldn't necessarily be a paramount one, because if it is that pretty much limits you to problems that can be solved by small quantities of money. Buying a cup of coffee for a homeless person is perfectly efficient, unlike building affordable housing which necessarily involves waste.
I take no position on the efficiency of this particular campaign, because I know of no other comparable one. The only way to know whether it was irresponsibly run would be to audit it.
But you spent that $1.50 on sending junk mail to a bunch of people so you could spend $1.00 on salaries. Why wouldn't you directly spend the $1.50 on salaries?