3 ms·

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

by starky 10y ago

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.

cmdrfred 10y ago
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.
- starky 10y ago
  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).

by starky 10y ago

cmdrfred 10y ago

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.

starky 10y ago
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).