If you click on the Tab 'FRANCES CHANGED MY LIFE' it shows that band members John and Zoe have a daughter Frances. They're raising money to fund research into Frances' rare neurological disease:
"Frances has a rare genetic mutation that causes a degenerative disease called DHDDS. In the last few years, breakthroughs in medical science have made it possible to develop a treatment. Unfortunately, it's extremely expensive. We are telling Frances’story in hopes of raising enough donations to fund her treatment."
Why isn’t the band doing a charity tour to donate the proceeds. The fans can pay to enjoy the music and the band donates a boatload of $ to the cause that is near and dear to them.
These things always make me uneasy. On the one hand, I understand they are in a very hard situation. On the other hand, donating to research into rare neurological diseases will literally save hundreds of times fewer lives than donating to "effective" charities (https://www.effectivealtruism.org/)
Not all lives have the same subjective utility to the donor. When pressed into making a choice I think most would rather save their own child’s life than a million random children in Africa. If someone likes the band I imagine the donor would feel more utility in helping them than saving a greater amount of people they have no connection to.
> most would rather save their own child’s life than a million random children
The idea of effective altruism is that this is immoral, and that our instinctive behavior of being so indifferent to the sufferings of those we don't feel "close" to should be fought against.
Sure, but there is no reason to think that universal utilitarianism is the correct moral philosophy. I think lots of people get trapped into thinking from these universal principles in the abstract and it’s important to remind that that’s an absolutely arbitrary, and not-natural-to-humans, way of thinking about ethics. Our view of other humans absolutely doesn’t, and shouldn’t, start from an uninformed prior.
Charity begins at home. It's immoral in my -ism to send money halfway around the world, while ignoring the growing misery in your own city. Similarly it would be immoral to sacrifice your own child to save the lives of two strangers. If EA'ers really acted according to their ethos, they would be harvesting and donating their own children's organs. Two kidneys, two lungs, a pancreas, a liver, and a heart could help a lot more people than the one underdeveloped being they're currently hosted in!
As a fellow fan of effective altruism, I really don't want people to think of it as the group that shows up whenever someone is asking for help and says "Don't help them! You should be helping these other people instead!"
Empathy is crucial for motivating people to give to any cause, and it's a crucial part of why I'm involved in EA. If someone's first/main exposure to EA is along the lines of "you should ignore this cause which touched your heart, because numbers", it's not going to resonate. I want people to be excited about the good they could accomplish by donating to EA-aligned charities, not feel like I'm trying to press some distasteful obligation onto them.
Also, it's not a zero-sum game in practice. People can be inspired to increase the total amount they give (so giving more to effective charities doesn't necessarily mean giving less to other charities they care about).
Is this a reference to Sam Bankman-Fried ? He was a promoter of effective altruism and also a fraudster. But I'm not sure why that should prevent non-fraudsters to also promote effective altruism.
His perspective was literally that being a fraudster is OK if it nets you billions of dollars that can go toward significant causes. It's at the core of "effective altruism": the ends justify the means.
So yes, he was a shining example of why "effective altruism" is just an excuse to do terrible things / make small improvements in the world.
"Frances has a rare genetic mutation that causes a degenerative disease called DHDDS. In the last few years, breakthroughs in medical science have made it possible to develop a treatment. Unfortunately, it's extremely expensive. We are telling Frances’story in hopes of raising enough donations to fund her treatment."
https://www.chrisblackchangedmylife.com/donate
Hopefully the HN traffic boost can help drive some donations and new research into treating neurological diseases. Donate!