Goodbye with Love | Hacker News Reader

Goodbye with Love

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375 pointsthekevan29 comments

It looks like he’s looking for some help getting something set up for donations for his wife. Doesn’t look like he’s getting much actionable advice there. Maybe someone here can help?

https://www.reddit.com/r/linux/comments/dhf1vo/comment/f3opz...

It's gaining some traction:

https://www.reddit.com/r/linux/comments/dhlvtu/setting_up_do...

You can find something on gofundme but I'm not going to share the link until we're sure it's legit.

Why do we spend so many trillions of dollars in wars and pointless witch-hunts like "the war on drugs" instead of searching for cures and treatments for all these major diseases, knowledge about the human body would be ages ahead if we had realized that decades ago; but like they say the second best time to start is now, and as weird as it sounds the solution is to focus the adults of tomorrow into such ideals, meaning actions like showing them what is like to deal with such terrible diseases, teaching them about all the pointless pursuits where we have wasted unfathomable amounts of money so they may not repeat the same mistakes.

Because enough people in society want vengeance and retribution more than they want rehabilitation and research.

Whilst I agree that there are some very wrongheaded policies out there which waste resources, good scientists and medical researchers (or if you prefer, people who could potentially be good scientists and medical researchers) are a limited resource and they’re not being diverted, on the whole, to the war on drugs etc.

It might be more relevant to think/complain about eg why data scientists are going into advertising instead of certain types of medical research where their skills might be very relevant.

There is a very, very, very, very, really truly properly real effect of money for research. More money means you can run the same studies/trials on bigger cohorts. This directly leads to better data, which means we can demand stricter hypothesis testing (p-values, narrower confidence intervals).

More money means you can simply hire more technicians to do more lab work. More specialists for data processing, statistics, stats review.

You could compensate referees ... maybe, just a thought. Nah, just let's directly pay more to Elsevier.

More money would mean better and bigger experimental machines.

More money would/could translate into better pay for PhDs, so they wouldn't be incentivized to leave for industry.

And so on.

It is surprisingly difficult for private sector data scientists and engineers to help with any type of research. Universities look at data problems and just throw unpaid/underpaid graduate and undergraduate students at the problems. There is no way any private sector data scientists can compete with that. Even trying to create tools for the grad students to use isn't really that viable. There is so little budget to spend on the tools, and the turnover is very high in research, so the amount of time it takes for sales people to forge relationships and trust is lost. I am not sure what the answer is. I have seen some spectacular utilization of data analytics and science by insurance, banking, credit unions etc. that I think would directly translate to better medical research, but I have no idea what path to take to bring it there.

Maybe reach out to some enterprising professors you knew in college and offer your specialties?

Or why they go into trading. Like I did.

I got a BME PhD, did neurology/BCI research as a professor, and had to leave because I couldn't get grants. Also, I thought it would be cool to move my family out of my parents' basement, since about 40% of every paycheck went to student loans.

Not to mention healthcare, given that his wife supposedly has had to leave work for three years to care for him, instead of providing a working healthcare system. Which will have lasting effects on his familys life after he's gone, and in aggregate a loss to the workforce.

> Why do we spend so many trillions of dollars in wars and pointless witch-hunts

Not "we" but "they". The US is at best an oligarchy or at worst a fascist state.

Despite the downvotes this is getting because of the "fascist state" hyperbole, this is a totally valid remark if the goal is to actually answer the parent's question.

Most country-scale decisions in the US and other similar states are so removed from any democratic input that interpreting them as coming from a generalized "we" is a fallacy. A more relevant way to ask the question would be:

> "Why do our leaders spend so many trillions of dollars in wars ..."

Phrased this way, it's easier to guess what kind of incentives might have pushed every government since the Lumières [1] to allocate their funds in a different way than you're suggesting.

[1]: https://en.wikipedia.org/wiki/Lumi%C3%A8res

It is more lucrative for interested parties (read that politicians) to spend money on military than on healthcare. Or education. Or environment protection.

Exactly. Healthcare doesn’t make nearly as much money as sickness management. Big pharma is just like big tobacco, they want customers for life.

>Why do we spend so many trillions of dollars in wars and pointless witch-hunts..

Because there exist many bad people in this world who want society to control other people more than the absolute minimum needed for society to function. If you phrased the question differently and picked a different issue you'd find many here in support of it. All the other parties (cops, politicians, etc) are just making a buck while helping implement the utopia the first group wants.

I think very relevant: Effective Altruism -- a community of people working on finding effective ways to make the world a better place.

One of the initiatives from the movement is 80,000 Hours - encouraging and providing resources to help people do meaningful work (80,000 hours is roughly how many hours one will spend working during their working career: with this many hours to spend, one can do a tremendous amount of good if targeted properly!).

https://80000hours.org

Because of essentially laziness, in the end?

My guess is that it's just easier to think in old, primitive ways, like "ugh, war!", rather than creative ways at the edge of what's ever been known, like is required for progress in disease research.

His first post in the ALS subreddit is a Morse keypaddle hooked up to a 32 bit microcontroller...

https://www.reddit.com/r/ALS/comments/98zvwm/i_dont_know_if_...

How brilliant. It's a shame the post didn't get any traction at the time

> Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease, is a specific disease that causes the death of neurons controlling voluntary muscles.

https://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

don't know ya Cooper just did a quick google on ya and viewed the reddit post, from what i gather you made the world a better place. thank you.

He made the entire open source community better and will be incredibly missed.

Horrible disease, and a shame that we are unable still to understand the problem correctly to be able to strike back

My sympathy for this man and his family. I hope that this will not destroy them, but will be a hard fight. The worst and more challenging three years of their life, that's for sure.

Sad to hear. Reminds me of Hal Finney who died from ALS in 2014.

Another hero who died too soon...

I don't know much about ALS. How does one know that he is going to die "in the coming days"?

My understanding was that as it's a progressive disease, there are milestones in progression that help predict future events. Things tend to shut down in a particular order, and at a certain rate (based on past events and stressors).

One of those future events is losing the ability to breathe. Which is just horrifying to think about.

He's had it for at least a year. The disease gets progressively worse with time, and eventually causes patients to lose the ability to swallow or breathe. Doctors can probably give him a good estimate of time left based on symptom progression.

From wiki: "The average survival from onset to death is two to four years, though this can vary.[5][16] About 10% survive longer than 10 years"

https://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

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