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."

Comments

Re:Wait... Who got that other half of the $$$ rais

[usa4ever]

$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.

Re:Wait... Who got that other half of the $$$ rais

[hey!]

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.

Kind of...

[Timothy2.0]

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.

Re:Kind of...

[bluefoxlucid]

A lot of things are observable from the Ice Bucket Challenge.

First: ALS affects a tiny, tiny fraction of the population. 36,000 people worldwide. Diverting resources to ALS diverts those resources away from efforts which affect hundreds of millions of people. That means you get to pat your back for pulling bread from 10,000 starving childrens's mouths to feed ONE starving child somewhere a few miles away instead. (Okay, that's not the right metaphor; it's more like you diverted the truck to another state before it even got there, which would necessarily have to bring *all* the food on that particular truck with it; if you were going to take out of people's hands, you wouldn't really take so much. The image is more powerful, though.)

Second, people are prone to pat themselves on the back for finding not-definitely-useful information. They found a gene link. That's a link, but not necessarily causative. This could mean basically nothing, or it could be a tiny step in a long, long chain of things. Economically, this kind of research becomes less-expensive and faster with technology: tiny steps like this every decade give way to steps like this every few months; with the overtaking pace, you can actually just wait for technology to catch up, then *start* your research, and actually arrive at the end point at the same time as a research base started 40 years prior. If this turns out nothing for the next several years, and then an explosion of genetic research techniques appears, then this particular research was an enormous waste of time and resources.

Third, as you observed, everyone wants to imagine they helped. They wave their hands around, put a dollar in a bin with 18 billion dollars, and claim they were part of something when their entire effort was a skipped trip to the vending machine.

Re:Marketing Agency Pats itself on the back

[Opportunist]

Prostate jokes are not funny.

Now get offa my lawn!