“Just so everyone is aware, there is a bunch of misleading info being spread around re: ALS research - the “27%” figure is based on previous years’ annual funding; furthermore, the remainder goes to improving the quality of life of those suffering from ALS. Given that the annual funding is approximately 16M, that’s just over 4M spent on decreasing their suffering. It isn’t greed, it’s a lack of money.”
Shut up already.
The ALS Association has a 4-star rating from Charity Watchdog.
And the next time you start to complain about a charity either a) working on multiple fronts (because that’s what ALSA does—both seeking a cure and helping people suffering now) or b) daring to have administration expenses—let’s see how long you can last, much less tackle a cause, without printer paper and an internet connection.
As someone who has watched a family member die from a neuro-degenerative disease; funding to develop better wheelchairs and bedsore creams is *just* as important as funding research to cure the disease itself…
A friend of mine posted an update from one of HER friends to FB earlier. Her dad has ALS. The ALS foundation came out to see if they could put in a ramp for his wheelchair, but they couldn’t afford it because of the kind of ramp he needed for the kind of house they had.
This week they called back and said hey, the thing is, we suddenly have a bunch of money, so we’re coming out to build that ramp. And they did. She posted pics.
So if you feel like bitching about the ice bucket challenge…reconsider.
Something people need to remember is that a good charity for people who are ill and/or disabled allocates funds towards improving quality of life and access to services in addition to research and treatments
in fact, the very issue that people have with the organization Autism Speaks is that it spends too much money on research/”cures” (which, btw, most autistic people don’t even want and most experts don’t even believe will be possible) and that the funds allocated to helping actual people with autism is pennies in comparison
what people without these kinds of conditions have to understand is that if a charity does not actively prioritize the current, immediate needs of people who are alive and need help, it is incredibly misguided; you cannot be claiming to help these populations when all you’re worried about is the theoretical and scientific aspects and ignoring application.