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The ice bucket challenge dramatically accelerated the fight against ALS (alsa.org)
174 points by fanf2 36 days ago | hide | past | web | favorite | 53 comments

The article doesn't seem to make any references to concrete advances. It's unsurprising that an influx of donations resulted in an increase in research grants and money spent, but that's not the same thing as decreased mortality, morbidity, or even breakthroughs in understanding. A lot of research money is effectively wasted so until specific evidence is provided that there was a deep impact, I just see this as a particular special interest applauding money going in their direction (potentially at the expense of other causes which could make better use of it).

As a result of the funding, researchers were able to discover NEK1 - a newly tagged identify genetic factors contributing to amyotrophic lateral sclerosis (ALS). The article was published in Nature and can be found here. https://www.nature.com/articles/ng.3626. The discovery was a direct result of the money raised from the Ice Bucket Challenge.

Thanks, on p.15 of the linked RTI report[0] a number of other recent publications are also pointed out as particularly significant (seemingly based on number of citations). Unfortunately, it's hard to gauge the extent to which these are likely to result in actual medical advances as someone who does not know the domain well. Would appreciate any insight from any researchers who can break it down a bit.

[0] http://www.alsa.org/assets/pdfs/RTI-Report-FINAL.pdf

We probably won't know that for a long time. The lag time from basic research to FDA approved treatment is measured in decades.

Decades and billions and billions of dollars, plus a 90%+ failure rate.

> In total, we observed NEK1 risk variants in nearly 3% of ALS cases.

This isn't surprising, as the days of single-locus disease discoveries are largely behind us, but this is just one small factor among many. It can hint at functional things, but mostly it's another landmark for risk-screening.

> NEK1 has been linked to several cellular functions, including cilia formation, DNA-damage response, microtubule stability, neuronal morphology and axonal polarity. Our results provide new and important insights into ALS etiopathogenesis and genetic etiology.

This is basically a grab-bag. I wouldn't expect any kind of applied research based on this for another grant cycle or two.

Radicava was approved in Japan in 2015 and by the FDA in 2017 to treat ALS though presumably most of the research for it occurred long before then.

It costs $145000 per year in the US and $35000 per year in Japan. It slows down the progression of the disease in a specific subset of patients (early stages of the disease with rapid progression of symptoms) which comprises approximately 7% of people with ALS. Trials among a general ALS population failed to show any efficacy.


I was actually just talking about the Ice Bucket Challenge the other day, in regards to unexpected side-effects of an otherwise shining campaign.

This viral challenge raised an unprecedented amount of money for awareness of ALS, as well as research and treatment. It was the first social media campaign of this type, and you'd be hard-pressed to find someone who hasn't heard of it.

But it also created a very - weird - secondary effect.

It encouraged teenagers to dump ice-cold water on themselves on camera, and upload it to YouTube for attention.

You might see where this is going: Ice Bucket Challenges featuring teen girls were far more popular than any featuring men/boys. And the more revealing the girls' clothing, the more attention still.

This has actually lead to a variety of water-based "challenges" that serve no other purpose than to put a wet, partially-dressed child in front of a camera for long enough for a pedophile to "enjoy" it.

Now there are tens of thousands of generic "water challenge" and "pool challenge" videos that serve no altruistic purpose whatsoever. They exist just to attract views - and money.

Many of these channels are run by parents who film their own tween daughters in skimpy bikinis a few days a week for ad revenue. "Desafio da Piscina" ("Pool Challenge" in Portuguese) is one of the most prevalent, with almost all videos shot in Brazil.

I imagine that at $20USD/10k views, people in third-world countries can rake in a decent passive income selling sexualized videos of their children to the Internet.

Sad part is that YouTube lets this happen, because it earns them money too.

As a result of the funding, researchers were able to discover NEK1 - a newly tagged identify genetic factors contributing to amyotrophic lateral sclerosis (ALS). The article was published in Nature and can be found here. https://www.nature.com/articles/ng.3626. The discovery was a direct result of the money raised from the Ice Bucket Challenge and can be used today as an indicator of genetic predisposition to ALS.

Hundreds of millions of dollars for research...

The US alone is a $20 trillion economy.

Harvard has a hedge fund of almost $40 billion, Yale is about $30 billion, ...

We spend $18 billion on bottled water yearly.

There’s a lot of money in the US economy that we just need to figure out how to get into basic research.

Give up bottled water and donate the money to medical research for a few years?

This very common trope always annoys me. "There is so much money flowing through the economy, and I just need to get a little bit for {insert cause}".


Money does not flow like water through pipes, and you cannot just siphon some off without affecting the whole. Dollars are packets... each one is addressed to a particular destination, and sent to accomplish a specific purpose. If we want money for {cause}, we must choose to address dollars to that cause to the exclusion of other purposes.


(I know that melling specifically mentioned giving up bottled water, but there has to be a compelling reason to do so that EVERY dollar/packet sender agrees on.)

This is basically anti-tax rhetoric. I don't think there's a single thing in the world that everyone would willfully agree to spend their money on. Which is kind of why taxes exist in the first place.

Before asking for more of the money spend freely you should stop and ask your elected officials to not spend the money so recklessly.

millions, if not billions, are wasted every day by politicians propping up their political power yet by some miracle if we just took more money they could spend it more wisely.

if is the near impunity and preponderance of so many taxes that has led us into a situation with untold wealth in government hands and near financial accountability for a good portion of it.

Many love to lambast Federal spending but you would be aghast at how much of county, city, and state, funding is now going to pay. California, thirty thousand plus retirees pulling down 100k, nineteen thousand in Illinois. All justified because they were paid a lot working for the government. Twenty billion per year in retirement just from CalPers, twelve billion in Illinois. That is pension numbers, not active employees, which far outnumber them!

anti-tax rhetoric exist because politicians use the public money to grant largess to insured voting bases, the very people working in their jurisdictions and trying to FUD you in going along with it.

"Of course, if only we'd thought of that! All that waste we waste, we could just stop wasting it!"


I have always thought it was weird when people get possessive about their tax money. As in, that's my money you're spending!

It isn't yours, because however mandatory it was you paid it to them, and when you give it it ceases to be yours. At any rate even the richest among us are making comparatively miniscule contributions in the scheme of things.

There are plenty of things the government does that I like, and I would sure like to pay for those ahead of say, funding for wars I don't like or finding new and indirect ways of killing people (by this I mean military spending), but I pay my taxes with the understanding that this is all part of the deal.

>>It isn't yours, because however mandatory it was you paid it to them, and when you give it it ceases to be yours.

It's more than that.

Tax money was never yours to begin with. You owed it to the government by default. The government just allowed it to touch your bank account temporarily before collecting it.

No. If you live in a democracy then the tax money is yours. You are the government. You have every right to complain about what they are doing with your money.

I don't think anyone is arguing you don't have the right to complain about where tax dollars go. They're arguing against the idea that taxation is theft, and the government doesn't have the right to collect it.

Isn't 'they' 'you' then?

And this complaint is called an "election". Seems to me like getting super possessive about what the elected people do without a proposed solution (elect somebody else, run for office, etc.) is nonproductive and fails to grasp some essential point about the whole thing.

Seems to me like complaining about some types of spending would be a good way to garner support and win an election, if enough people agree with you. But maybe that's just me.

What about the Great Recession happening because of the lack of credit availability?

Is that a lecture about opportunity cost?

Consumers can vote with their dollars. I’m not sure why you don’t think we can’t channel money in various ways. A lot of money has gone into AID’s research, for example, and a lot of progress has been made.

Spending money on research is one thing. Making it count is another.

We spend enormous amounts of tax payer money on research that isn't reproducible.

Lots of research isn't published.

Research that is published is often produced in paid journals that restrict access.

We need to upend the research industry. We need more of a sci-hub approach to research and less of an elsevier approach.

Exactly. It's naïve to think money is the problem. It's not like you can pile up a $1B in cache, make a huge bonfire out of it and cure some deadly disease for all humanity forever just like that. If it was, I'm pretty sure you could find a million people on the planet to donate a $1000 on average for that cause.

But in reality, you are unlikely to get a $1000 from me even for the cause I find extremely important. For all I know, my money is going to end up in the pocket of some medical research center director, who is basically a politician and a fraud, with an income far surpassing mine to start with. And the new car he buys will provide zero help to solve the problem.

Basically, I believe much more that government will spend my tax money wisely (which I don't believe, obviously), than I believe academia is able to somewhat efficiently convert money into solutions. And it doesn't matter if I'm right or wrong, it only matters that I'm not the only one like that, and it isn't even a human problem as much as the nature of how things are: and that exaplains, why the whole "there's so much resources(/money) in the world, why cannot we..." argument is silly.

I suspect your points are spot-on, but I wish we had concrete numbers associated with your bullet-list. Otherwise I'm not sure if I have things in proper perspective.

Sure. That’s a separate problem. If we spend $1 and only get 50 cents worth of research, we should try to spend the money more effectively.

Then if we double the research spending and double the effectiveness, we’ll get 4x the research.

> There’s a lot of money in the US economy that we just need to figure out how to get into basic research.

> Give up bottled water and donate the money to medical research for a few years?

This is a false "we". There is no coherent group with similar goals you're talking about; just a mass of humans who care more about drinking bottled water than medical research.

> "just a mass of humans who care more about drinking bottled water than medical research."

just because I drink coke doesnt mean I care more about drinking coke than spending money on NASA.

>> "just a mass of humans who care more about drinking bottled water than medical research."

> just because I drink coke doesnt mean I care more about drinking coke than spending money on NASA.

In your specific example, you can't easily give money directly to NASA, so it's a bit murky.

Just because you drink coke does mean you care more about drinking coke than spending money on animal shelters, the red cross or cancer research.

I, personally wouldn't feel bad about it; everyone, excepting a few weirdos, is like this.

"Action is distilled intent"

I get the statistics but I think many people often over look good marketing.

The reality is that you need a good marketing team like Breast cancer and such to get funding. Even my alma mater have a dedicated group reaching out for donation from graduates. You have to sell your cause and appeal to it so that potential donator can relate; basically target the emotion not the logical side of people for donation.

At least this is what I think is needed.

This is wild- anecdata but I feel as though a lot of campaigns like this get a lot of "put your money where your mouth is"-type responses that are skeptical that web activism will have any impact. It's a relief that this pulled through and had a positive effect!

Might be O/T, but I'm always surprised at how much our understanding of medical science comes down to basically a set of integration tests. You don't really know if your solution is going to be a global optimum (it probably isn't); you have to memorize a bunch of stuff in order to have the full context of a problem available when you approach a subset of it at work; and sometimes the "ideal" solution is so stochastic that you need multiple opinions / consensus.

I guess it's kind of like hardware engineering; I think we only glossed over how the physics worked in a CPU worked before working on higher-level things like NPN/PNP transistors and such, but even so there's a digital abstraction layer in computer architecture that make effective reasoning so much easier (even though there's really no such thing as "digital", only analog and clear thresholds)

Am I (hopefully) wrong on this? Can modern medicine ever come from a first-principles approach?

Nearly all medical advance goes like this:

1. Administer treatment to some patients. 2. See benefit. 3. Try it on more people. 4 (optional). Do research to understand mechanism.

By and large medicine is not a "science" in the sense that it is interested in results, not building models.

Awesome, glad to see dumping ice water on your head and uploading it to social media accomplished something.

I am skeptical. Until they publish a number on "number of new trials funded" this is just the usual "more money is good because we get to spend more money" type of press release.

can we have one for climate change?

Getting people involved helps causes push forward.


And even then only really when the problem is a single problem, and when it is solvable by throwing more money and people at it.

Not to be a Debby downer, but these posts always make me think of how many people just did this for a fad instead of meaningfully contributing. I almost think, why can't we just keep donating over and over, without the fad, at a lesser quantity if the fad produced such a significant contribution. I can understand that giving money can be just a waste, but if it really made such a significant impact, it seems like just taxing everyone and sending it directly to ALS would've done the same thing.

Does it matter why people donated and/or became more aware of the disease?

This appears to be a PR piece by the ALS-fighting company, The ALS Association, themselves.

And if by company you mean registered nonprofit dedicated to fighting ALS, then yes, spot on.

Being a registered non-profit doesn't really exclude you from making money or being "evil". The majority of hospitals are non-profit, for example.

I am in no way saying the ALS Association is evil.

I think it's pretty common to equate making money to making a profit for a corporation, and in that sense they don't make money.

But the context the GP used was to make it "evil" that the ALS non-profit released a post on the Ice Bucket Challenge benefiting ALS, which was sort of bone headed. Well why wouldn't they post that the money was used to help their cause? That's a good thing!

It's literally a press release on the ALS associations website. Did you believe you were making an insightful comment when you hit the submit button?

does that really discredit it instead of amplify ongoing efforts?

like seriously what other organization on the planet is going to fund or even talk about any particular study, than the organization already incentivized to.

what you want to look for is repeatable results that another generic organization can then do, not merely saying "hey look the sugar industry did this study about sugar, follow teh moneyz!"

I don't understand why you are being downvoted. This is certainly a PR piece and it makes no mention of whether any actual metrics have moved, just that a lot of money was raised.

Pointing out that a press release on an organization's website is PR by that organization is simply not a useful comment. The only thing that comment added beyond pointing out the obvious was a way of phrasing it that implies that ALSA is somehow nefarious, which could generously be called a middlebrow dismissal.

I commented when there were few comments on the article hoping to head off people from thinking it was a substantive article. My comment now seems like I'm trying to discredit them. I'm not. I want to see ALS conquered more than anyone. However, it is very difficult to learn anything new from a PR release and I was hoping to save everyone some time.

Pink ribbons raise awareness of breast cancer, not how to tie a pink ribbons. The Ice Bucket Challenge raised awareness of how to do the Ice Bucket Challenge far more than awareness of what ALS is.

Maybe that is why the money rolled in, it was an internet meme that wasn't rocket science to do but everyone wanted in on the fad. Fortunately for the ALS charity the default was for the money to go their way.

So maybe not a win on awareness raising even if they did get the cash.

I don't see how you figure. There is no default place for money to go when people pour a bucket of ice water over their heads. It's not like the ALSA was selling ice. The only way it raised money was by raising awareness.

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