The ice bucket challenge dramatically accelerated the fight against ALS

http://web.alsa.org/site/PageNavigator/pr_060419.html

by fanf2 • 7 years ago

174 53 7 years ago

web.alsa.org

wolco• 7 years ago

Getting people involved helps causes push forward.

kleer001• 7 years ago

Sometimes.

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.

murph-almighty• 7 years ago

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!

jimbob452• 7 years ago

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

SEJeff2• 7 years ago

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

berdon• 7 years ago

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.

rolltiide• 7 years ago

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!"

jMyles• 7 years ago

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.

chc2• 7 years ago

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.

oh_sigh• 7 years ago

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?

melling3• 7 years ago

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?

godzillabrennus• 7 years ago

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.

DoofusOfDeath• 7 years ago

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.

melling3• 7 years ago

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.

krick• 7 years ago

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.

anthony_doan• 7 years ago

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.

_ah• 7 years ago

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}".

No.

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.

/rant

(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.)

jshowa32• 7 years ago

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.

melling3• 7 years ago

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.

mainliningfbs• 7 years ago

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

nordsieck2• 7 years ago

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.

autokad• 7 years ago

"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.

0xfffafaCrash2• 7 years ago

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).

Jmilin2• 7 years ago

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.

0xfffafaCrash2• 7 years ago

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

opencl• 7 years ago

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.

https://www.healthnewsreview.org/2017/09/facts-about-the-new...

dannykwells• 7 years ago

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.

Theodores• 7 years ago

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.

chc2• 7 years ago

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.

Jmilin2• 7 years ago

jshowa32• 7 years ago

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.

MagicPropmaker• 7 years ago

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

yingw787• 7 years ago

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?

astazangasta• 7 years ago

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.

thoughtstheseus• 7 years ago

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

RIMR• 7 years ago

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.

asdf333• 7 years ago

can we have one for climate change?

The ice bucket challenge dramatically accelerated the fight against ALS

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