The Reven Pack Raises Over $2 Million in Support of CureDuchenne

I have checked their tax reports for 2023; they got money from the US workforce, not vice versa. This is insanity.

It is so sad to see that uneducated US citizens think they are helping. 80% of that money won't even affect the people who are being cured. Most of the time, there are some backroom deals for this type of money in the management of both companies.

Making a steak and giving it to your local homeless in your area would help a lot more.

Originally Posted by Yrelen

I have checked their tax reports for 2023; they got money from the US workforce, not vice versa. This is insanity.

It is so sad to see that uneducated US citizens think they are helping. 80% of that money won't even affect the people who are being cured. Most of the time, there are some backroom deals for this type of money in the management of both companies.

Making a steak and giving it to your local homeless in your area would help a lot more.

...so even if we take your unsourced nonsense at face value, that "20%" that's supposedly actually going to the cause in question is still doing more than you're doing, which is...

...lemme check...

Oh, right... nothing.


Some people would complain if they were hanged with a new rope, I swear.

Originally Posted by Kaleredar

Some people would complain if they were hanged with a new rope, I swear.

You are attacking my person, not the facts...
I would like to see your sources if you are so sure that most of the money ends up helping to cure people.

Here you should check back when they do the 2024-2025 report.

https://projects.propublica.org/nonp...ions/200299958

Originally Posted by Yrelen

I have checked their tax reports for 2023; they got money from the US workforce, not vice versa. This is insanity.

It is so sad to see that uneducated US citizens think they are helping. 80% of that money won't even affect the people who are being cured. Most of the time, there are some backroom deals for this type of money in the management of both companies.

Making a steak and giving it to your local homeless in your area would help a lot more.

Why would giving a steak to a homeless person help cure duchennes?
You're just mad to be mad right? If blizzard donates 2 million you get to be mad it isnt 3.

Originally Posted by Smeeh

Why would giving a steak to a homeless person help cure Duchenne?
You're just mad to be mad right? If Blizzard donates 2 million you get to be mad it isn't 3.

I advocate against stealing from the poor. If you don't see what is happening here I can not help you.

Originally Posted by Yrelen

I advocate against stealing from the poor. If you don't see what is happening here I can not help you.

What on earth do "the poor" have to do with research to cure duchennes?

And also if stealing means giving them any amount of 2 million dollars i wouldnt mind getting robbed a few times.

Originally Posted by Yrelen

You are attacking my person, not the facts...
I would like to see your sources if you are so sure that most of the money ends up helping to cure people.

Here you should check back when they do the 2024-2025 report.

https://projects.propublica.org/nonp...ions/200299958

You posted a link with a bunch of numbers I’ve no reason you’ve any particularly insightful angle towards, let alone enough to claim some sort of duplicity.

A quick google of the charity shows no allegations of mismanagement or misappropriation. Your link does not show that either.

So yeah, I’m gonna “attack your person” by claiming you’ve neither the evidence, nor the established ability to analyze it even if you did, to be talking smack about a charity doing work on something you’ve done no work on yourself.

Originally Posted by Yrelen

You are attacking my person, not the facts...
I would like to see your sources if you are so sure that most of the money ends up helping to cure people.

Here you should check back when they do the 2024-2025 report.

https://projects.propublica.org/nonp...ions/200299958

The burden of proof of proving the charity doesn't spend most of their money on helping battle the disease, either on a research, educational or treatment basis is on you.

Simply saying things and linking the tax filing without any further context on what you're talking about while implying CureDuchenne are a fraudulent charity is "<insert thing> does bad things, do your own research" levels of shouting into the void.

If anything, their website lists what research they've directly funded, what outreach programs they have as well as many more resources related to the disease.

I hate charities.

We should be allocating research funds for diseases like this from proper sources, not trying to cover with charitable donations.

"But wait!" you say, "this is just in addition to research funds! Totally different".

If only it was that easy. Politicians have consistently used the existence of charities to defer responsibility for public funding. Some have even said it openly, often for populist gains: "the people of <nation> are so generous, they can take care of this! we don't need to waste people's hard-earned tax money when the people of <nation> have such big hearts!". And it works.

Think something is worth spending money on to cure? Push your politicians to use your taxes on it. Don't give them loopholes to wriggle out of their responsibility just so you can personally spend money and see a significant amount of it disappear to overheads instead of being used for the cause. Even the Red Cross, which is among the most efficient charities, only gets to use about 90% of donations. For smaller and less efficient charities, it can be as low as 60% - and that's if they're reputable, let alone what happens with non-reputable ones.

Change needs to be systemic. Governments need to be forced to fund neglected diseases, orphan drugs, etc. so the people researching cures for such conditions can be sure of their funding, instead of having to make due with whatever the whims of the public deign to provide. And researchers should spend their time, you know, researching - not fundraising.

The charity/grant-giving/fundraising industry has been wreaking havoc on actual scientific progress, and stifling social responsibility by allowing governments to wash their hands off what should be their responsibility. We need work on cures for diseases such as Duchenne, and that work needs to be properly funded and supported by fixed, reliable sources. Not by people shifting money towards giant corporations so some of it hopefully trickles down eventually, provided of course the whole scheme isn't a giant box of fraud to begin with.

Originally Posted by Biomega

I hate charities.

We should be allocating research funds for diseases like this from proper sources, not trying to cover with charitable donations.

"But wait!" you say, "this is just in addition to research funds! Totally different".

If only it was that easy. Politicians have consistently used the existence of charities to defer responsibility for public funding. Some have even said it openly, often for populist gains: "the people of <nation> are so generous, they can take care of this! we don't need to waste people's hard-earned tax money when the people of <nation> have such big hearts!". And it works.

Think something is worth spending money on to cure? Push your politicians to use your taxes on it. Don't give them loopholes to wriggle out of their responsibility just so you can personally spend money and see a significant amount of it disappear to overheads instead of being used for the cause. Even the Red Cross, which is among the most efficient charities, only gets to use about 90% of donations. For smaller and less efficient charities, it can be as low as 60% - and that's if they're reputable, let alone what happens with non-reputable ones.

Change needs to be systemic. Governments need to be forced to fund neglected diseases, orphan drugs, etc. so the people researching cures for such conditions can be sure of their funding, instead of having to make due with whatever the whims of the public deign to provide. And researchers should spend their time, you know, researching - not fundraising.

The charity/grant-giving/fundraising industry has been wreaking havoc on actual scientific progress, and stifling social responsibility by allowing governments to wash their hands off what should be their responsibility. We need work on cures for diseases such as Duchenne, and that work needs to be properly funded and supported by fixed, reliable sources. Not by people shifting money towards giant corporations so some of it hopefully trickles down eventually, provided of course the whole scheme isn't a giant box of fraud to begin with.

Yes I’m sure if we dispel charities then the government will get right on curing diseases and solving homelessness and feeding children and so on and so forth. Especially this current one in the US, right?


Instead of… no research or action happening on it, and politicians making up other excuses for why they aren’t funding things.


I mean maybe. But whether they do or don’t, at least people completely uninvolved in any of it will feel validated that they don’t have to hear about it anymore, hm? And surely that’s worth the proposed indeterminate pause in funding life-saving research and resources. Nevermind what the people benefiting from those charities need at any given moment.


Oh BTW the charity in question here was founded by a couple whose child was diagnosed with Duchenne. I’m sure they’d love to hear your thesis of “dispel your charity and stop funding research, don’t worry the government will eventually take it over or something.”

Originally Posted by Biomega

I hate charities.

We should be allocating research funds for diseases like this from proper sources, not trying to cover with charitable donations.

You have it backwards; charities exist because nobody wants to fund these things properly.

Originally Posted by Kaleredar

Yes I’m sure if we dispel charities then the government will get right on curing diseases and solving homelessness and feeding children and so on and so forth.

You've got my point backwards.

My point is to push the governments first. And then wind down charities as a result. Not to somehow cut off funding from charities blindly hoping the government will sort it all out and if it doesn't oh oops.

But we need to change our thinking towards demanding more action from people that should be responsible for taking action, no question. And that starts with pointing out that this is a broken system. Not with just stopping everything and shrugging your shoulders going "I thought the government would step up, guess they didn't?" which is precisely the kind of deferred responsibility I'm complaining about.

Originally Posted by Kaleredar

Oh BTW the charity in question here was founded by a couple whose child was diagnosed with Duchenne.

And why did they have to do that? Because there isn't enough real, stable funding. That is the problem. That is what needs to be addressed.

I sympathize with them, and with any other sufferers from diseases that are neglected or underfunded. That is a major problem. But charities are not the solution. They're a band-aid.

Think of it this way: instead of primitively ranting about how can you look those parents in the eye for demanding they press the government for money instead of just donating, how about you think about the researchers who will spend extra years working on a cure because they had to spend time begging for grants and raising funds instead of working in the lab. Because that's a reality for many scientists currently. They are trapped in a grant economy that squeezes their research efforts both directly and indirectly, because so much of their funding is contingent on sources like this. How about you talk to the people suffering from diseases like Duchenne and tell them "sorry, we'll only find a cure for the next generation of sufferers and not you, because donations just weren't enough to cover the research quite yet; but at least your death will make tens of thousands of people feel real good about themselves for having contributed to charity!"

See, I can use emotional manipulation, too! And it's just as disgusting as when you tried it.

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Originally Posted by Calfredd

You have it backwards; charities exist because nobody wants to fund these things properly.

I realize that.

What I'm pointing out is that this is a problem, and that needs to be addressed. And part of the reason "nobody wants to fund these things properly" is because they think we can just leave it to charities. Politicians will frequently cite this exact reason, directly, for why they're not funding something.

And also, at some point "nobody wants to do it" just doesn't fly. Someone has to do it. Period. That's why we have governments - to make unpopular decisions that nevertheless need to happen for the social good.

Originally Posted by Calfredd

You have it backwards; charities exist because nobody wants to fund these things properly.

It’s the Same energy as “I don’t tip because the restaurant should pay the waiters a better salary.”

Like yeah, maybe they should, but not tipping doesn’t work towards making that happen so if someone doesn’t tip they just look like an asshole.

Maybe ask the person who’s actually being affected, and not the disinterested . Because the people benefiting from these charities probably care a lot more that they exist here and now than about how things “should work” in some hypothetical reality that isn’t ours and that isn’t actually brought closer to reality by not helping them.

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Originally Posted by Biomega

You've got my point backwards.

My point is to push the governments first. And then wind down charities as a result. Not to somehow cut off funding from charities blindly hoping the government will sort it all out and if it doesn't oh oops.

But we need to change our thinking towards demanding more action from people that should be responsible for taking action, no question. And that starts with pointing out that this is a broken system. Not with just stopping everything and shrugging your shoulders going "I thought the government would step up, guess they didn't?" which is precisely the kind of deferred responsibility I'm complaining about.


And why did they have to do that? Because there isn't enough real, stable funding. That is the problem. That is what needs to be addressed.

I sympathize with them, and with any other sufferers from diseases that are neglected or underfunded. That is a major problem. But charities are not the solution. They're a band-aid.

Think of it this way: instead of primitively ranting about how can you look those parents in the eye for demanding they press the government for money instead of just donating, how about you think about the researchers who will spend extra years working on a cure because they had to spend time begging for grants and raising funds instead of working in the lab. Because that's a reality for many scientists currently. They are trapped in a grant economy that squeezes their research efforts both directly and indirectly, because so much of their funding is contingent on sources like this. How about you talk to the people suffering from diseases like Duchenne and tell them "sorry, we'll only find a cure for the next generation of sufferers and not you, because donations just weren't enough to cover the research quite yet; but at least your death will make tens of thousands of people feel real good about themselves for having contributed to charity!"

See, I can use emotional manipulation, too! And it's just as disgusting as when you tried it.

You get right on that buckaroo.

Probably going to have to wait at least four years until you see any movement in that direction, at least in the US. And that’s assuming a democrat wins. And assuming they’re not too preoccupied fixing the economic turmoil of the Trump presidency. And assuming that voters don’t lose interest in the midterms because their collective goldfish brains can’t remember that the republicans put them in that spot and they hang up Congress again. And that any efforts put in place aren’t then defunded as a political tool.

I mean hell while we’re wishing, I wish there wasn’t such a thing as duchenne. Damn, what a good boy I am. And how good I am for wishing.

Originally Posted by Kaleredar

It’s the Same energy as “I don’t tip because the restaurant should pay the waiters a better salary.”

Like yeah, maybe they should, but not tipping doesn’t work towards making that happen

That is a good analogy, actually.

Point of fact: if everyone stopped tipping, it would, in fact, make that happen. But I totally get that this is an unrealistic expectation and not going to happen that way.

Which is why this is a battle on two fronts. Tipping culture needs to be curbed on the one hand; and legislation needs to be changed on the other. And these go hand in hand.

Same thing here. Charity culture needs to change; and legislation needs to change, too, in parallel and in conjunction with this.

But both require awareness and calls to action. People need to realize there's a problem, and that there's a way to effecting systemic change, rather than band-aid solutions.

Originally Posted by Kaleredar

Maybe ask the person who’s actually being affected, and not the disinterested . Because the people benefiting from these charities probably care a lot more that they exist here and now than about how things “should work” in some hypothetical reality that isn’t ours and that isn’t actually brought closer to reality by not helping them.

That's short-sighted and selfish thinking. Helping the people in the here and now is fine - helping the people in the here and now at the expense of the future is reckless and irresponsible. The whole point is that having stable sources of funding will be better for the people affected in the long run. Because it allows more and better research, and more and better scientific progress.

Go talk to some scientists right now and ask them how much they enjoy suborning their entire lives and careers to the grant-application mill. How much research they either couldn't do properly or chose not to even consider because of funding.

Originally Posted by Biomega

I hate charities.

We should be allocating research funds for diseases like this from proper sources, not trying to cover with charitable donations.

"But wait!" you say, "this is just in addition to research funds! Totally different".

If only it was that easy. Politicians have consistently used the existence of charities to defer responsibility for public funding. Some have even said it openly, often for populist gains: "the people of <nation> are so generous, they can take care of this! we don't need to waste people's hard-earned tax money when the people of <nation> have such big hearts!". And it works.

Think something is worth spending money on to cure? Push your politicians to use your taxes on it. Don't give them loopholes to wriggle out of their responsibility just so you can personally spend money and see a significant amount of it disappear to overheads instead of being used for the cause. Even the Red Cross, which is among the most efficient charities, only gets to use about 90% of donations. For smaller and less efficient charities, it can be as low as 60% - and that's if they're reputable, let alone what happens with non-reputable ones.

Change needs to be systemic. Governments need to be forced to fund neglected diseases, orphan drugs, etc. so the people researching cures for such conditions can be sure of their funding, instead of having to make due with whatever the whims of the public deign to provide. And researchers should spend their time, you know, researching - not fundraising.

The charity/grant-giving/fundraising industry has been wreaking havoc on actual scientific progress, and stifling social responsibility by allowing governments to wash their hands off what should be their responsibility. We need work on cures for diseases such as Duchenne, and that work needs to be properly funded and supported by fixed, reliable sources. Not by people shifting money towards giant corporations so some of it hopefully trickles down eventually, provided of course the whole scheme isn't a giant box of fraud to begin with.

I fundamentally disagree with you. No, the government shouldn't be allocating taxpayer money to these things. As the government grossly mismanaged money, as I think is coming to light. What the government SHOULD do is audit nom profits to make sure they are just that, and bring the hammer down on any fraud. People should be able to donate to any good cause as they see fit.

Originally Posted by Kaleredar

Probably going to have to wait at least four years until you see any movement in that direction, at least in the US.

Oh it'll take MUCH longer.

Decades, for sure. But that doesn't mean it shouldn't be pushed and advocated for. None of these are quick fixes or short-term solution. That's... kind of the point. To get away from quick fixes and short-term solutions and set up structures that will improve the base state in the long term.

Systemic change through revolutionary shifts is fantasy talk. Advocacy moves slowly, but it moves. And it starts with people's awareness, perception, and cultural sensibilities.

Originally Posted by Kaleredar

And that’s assuming a democrat wins.

I think it's misplaced to make this a partisan problem, as if Republicans couldn't understand why this is needed. That's defeatist talk. People need to change their demands, and then politicians follow suit because they're opportunistic, populist bastards - all of them, not just Republicans. Politicians just play the game; people set the rules.

Originally Posted by Kaleredar

I mean hell while we’re wishing, I wish there wasn’t such a thing as duchenne. Damn, what a good boy I am. And how good I am for wishing.

Well you just keep donating to charity like that good boy you apparently are, because nothing can change and you don't even want to try, but at least this lets you feel good and like you're doing something without actually having to, I don't know, think about it for more than two seconds or develop some kind of social conscience. Which I admit is a little more work than buying a WoW pet and patting yourself on the back for helping out.

I know that advocacy and activism like the one I espouse might not go anywhere. Snide apathy and self-congratulatory slacktivism, on the other hand, definitely won't go anywhere.

Originally Posted by Biomega

Oh it'll take MUCH longer.

Decades, for sure. But that doesn't mean it shouldn't be pushed and advocated for. None of these are quick fixes or short-term solution. That's... kind of the point. To get away from quick fixes and short-term solutions and set up structures that will improve the base state in the long term.

Systemic change through revolutionary shifts is fantasy talk. Advocacy moves slowly, but it moves. And it starts with people's awareness, perception, and cultural sensibilities.


I think it's misplaced to make this a partisan problem, as if Republicans couldn't understand why this is needed. That's defeatist talk. People need to change their demands, and then politicians follow suit because they're opportunistic, populist bastards - all of them, not just Republicans. Politicians just play the game; people set the rules.


Well you just keep donating to charity like that good boy you apparently are, because nothing can change and you don't even want to try, but at least this lets you feel good and like you're doing something without actually having to, I don't know, think about it for more than two seconds or develop some kind of social conscience. Which I admit is a little more work than buying a WoW pet and patting yourself on the back for helping out.

I know that advocacy and activism like the one I espouse might not go anywhere. Snide apathy and self-congratulatory slacktivism, on the other hand, definitely won't go anywhere.

What do the people suffering from these conditions need right now?

Aid, in the form of money, research, or hands-on efforts.

Who's giving it to them? The person giving them money, doing research, or contributing to hands-on efforts.

"Slacktivism" is going online and complaining about how the system isn't good enough while not doing anything to change the system, and misconstruing complaints as action. Who that can do anything is hearing your complaints? Are they incentivized to do anything about it?

Give a man a fish in one hand and a written letter about how it's unfair that he has to fish to feed himself in the other, which hand actually feeds him?

Originally Posted by Scathan

I fundamentally disagree with you. No, the government shouldn't be allocating taxpayer money to these things.

Okay. Why not?

Originally Posted by Scathan

What the government SHOULD do is audit nom profits to make sure they are just that, and bring the hammer down on any fraud.

That's grossly inefficient, though. You want the government to spend money auditing firms who also need to spend money managing donations. That's stacking overheads upon overheads, wasting money for no reason.

I agree with you that governments have a lot of efficiency and oversight problems, but why then are you suggesting that the government become the oversight agent for someone else, who, I might add, has personal financial incentives to not use the funds efficiently? Wouldn't the actual solution here be to just make sure the government is more efficient and responsible and has better oversight? Which would also solve a ton of other problems in the process?

Originally Posted by Scathan

People should be able to donate to any good cause as they see fit.

No one is saying people shouldn't be allowed to donate. But that shouldn't be the prevailing method of funding for things like neglected diseases, orphan drugs, etc. because it's counterproductive and inefficient.

I'm all on board with the ideal of donations providing additional funding above and beyond, but that's just not the reality we live in - and part of that is because if a cultural perception of charity that's being exploited politically. That culture needs to change.

To use the tipping analogy someone brought up earlier: it shouldn't be illegal to tip someone, but people relying on tips for their income instead of it just being a nice bonus that happens every now and then is a problem. And that situation is maintained largely by cultural paradigms.

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Originally Posted by Kaleredar

Give a man a fish in one hand and a written letter about how it's unfair that he has to fish to feed himself in the other, which hand actually feeds him?

I find it extremely ironic that you're invoking this particular parable, clearly demonstrating that you didn't understand the point of that parable. Which is precisely not to value short-term solutions over long-term improvement.

"But I'm hungry NOW!" says the man, demanding the fish. And will forever remain reliant on you being there deciding to give him a fish, because you refused to teach him to fish since "what does the man suffering from hunger need right now?"

Geez, man.

Originally Posted by Kaleredar

...so even if we take your unsourced nonsense at face value, that "20%" that's supposedly actually going to the cause in question is still doing more than you're doing, which is...

...lemme check...

Oh, right... nothing.

That's just whatabouism. You don't know him and you don't know how he is helping on his level. What you can pretty much assume, however, is that he's not a billionaire or a huge corporations with all the resources in the world. Corporatios that already got all the money required to help deserving causes (like the one here) but instead choose to gain easy public perception points, all while adopting greedier and greedier practices to fill the insatiable hunger of their executives.

Originally Posted by Smeeh

You're just mad to be mad right? If blizzard donates 2 million you get to be mad it isnt 3.

He does and you should to. Would you applaude a man with an full bottle because he's giving a drop a water to a thirtsy child ?

Originally Posted by Zardas

That's just whatabouism. You don't know him and you don't know how he is helping on his level. What you can pretty much assume, however, is that he's not a billionaire or a huge corporations with all the resources in the world. Corporatios that already got all the money required to help deserving causes (like the one here) but instead choose to gain easy public perception points, all while adopting greedier and greedier practices to fill the insatiable hunger of their executives.

they can feel free to refute me.

...which... they didn't. They just posted a link to a tax filing with no context to imply some sort of malfeasance on Cureduchenne's part.

He does and you should to. Would you applaude a man with an full bottle because he's giving a drop a water to a thirtsy child ?

How much did you give to that thirsty child?

You know how much money Cureduchenne would have if Blizzard hadn't done this charity event? At least 2 million fewer dollars. If you asked Cureduchenne "hey would you rather get 2 million dollars, or zero dollars?" I'm pretty sure I can guess their answer.

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Originally Posted by Biomega

"But I'm hungry NOW!" says the man, demanding the fish. And will forever remain reliant on you being there deciding to give him a fish, because you refused to teach him to fish since "what does the man suffering from hunger need right now?"

Geez, man.

No, my example makes perfect sense. Because the opposite in the parable is "teaching a man to fish." But you're not doing that, even. So absent teaching the man to fish which as we've established you're not doing, I'm sure he'd damn well rather have the fish than a vague placation that it's unfair he has to fish.