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Comment by cmdrfred | Hacker News Reader

Let's say this discovery leads to a drug/treatment for the disease. What happens to it? Does a company get to patent it and then sell it back to the people who paid for the research (with donations)? Does it become public domain? This ambiguity has prevented me from donating to similar causes in the past.

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The end result is what matters for most people, not the politics. Discovering a cure for ALS would be an amazing medical feat.

To answer your question, the ALS association raises public awareness about ALS, provides care services to ALS patients and distributes funding to research projects on ALS. The politics to when one of these research facilities discover a cure for ALS is up to them. They are just receiving grants from the ALS Association.

So it is as I suspected. That may work for some people, but I won't personally donate to any "for a cure" causes. My money's better spent elsewhere.

There are many ALS organizations, some larger than others. They all typically split their money between support and research, but a local ALS chapter will have a larger focus on providing support and equipment for people with the disease in the area.

ALSA got most of the support from the ice bucket challenge, and their focus will be more on research as a national charity, but local ALS chapters do a ton for a rapidly changing and expensive disease.

So it's less about a cure and more about patient services? If it was more advertised that way I'd chip in. I find some "charities" suspect for medical bills. I do some work for an oncology practice and heard a few of the doctors talking about the "charity" they set up. Basicly they find a patient that would never be able to pay the bills that are owed (IE. Patient has no assets, is 90 years old, and owes 200k on a fixed income) and forgives that debt via charitable donations. "It's a way to get paid for things you would not be otherwise" were the exact words I believe.

They have nice little pamphlets that talk about "Give the gift of honor". I find it rather despicable how they use the emotions of relatives of those who have passed on to pad their bottom line.

I can't speak for all the different ALS charities, since they are independent, but as a charity their financial statements will be available. For example, my province's ALS charity spent about $500k last year on equipment loans, while research was only about $20k through donations to ALS Canada. The ice bucket challenge donations were mostly donated for research, as that is what people were expecting to be donating for, and they only have so much patient support they need to give in any year.

I have a family member with ALS and can confirm that they have done a ton to support with various equipment needs and finding the right equipment for them. Support caregivers are only partially paid for (though I can't remember whether that is through the charity or the province).

There is a long distance between the research ALS foundations pay for and a drug.

Why can't the people who develop it reimburse those who donated(with interest) at very least? This is a sector that has rather loud comments regarding it's intellectual property and make no mistake, human beings have died due it's monopoly. Is it not fair to ask for a piece of the action? Wouldn't they?

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