People are stupid and jump on bandwagons. The massive majority I've seen don't or barely mention charity.
More importantly is you can't just throw money at research or a charity and expect results.
The charity both doesn't give an awful lot to research, but that is also being heavily misrepresented. They have 50 or something regional centres that run classes, help people with ALS in the community and offer support. I can't say(because there isn't a lot of information on specifics) how useful these centres are but managing people with ALS would generally speaking cost more than researching.
There isn't unlimited researchers out there, and someone has to have an idea what to look for, an avenue to go down that might help.
This is where the Ice Bucket challenge is wrong. They've spent circa $30mil a year or so on research and running the centres. Just because there is more money doesn't mean there is more people actually with an idea how or what to research.
The ALS foundation has gotten enough money to run for two years, or enough money to fund the research they fund for a decade. Switch to another charity that needs money to fund research. There are thousands of horrible diseases that hurt people, ALS is "done", they can triple funding overnight and have enough to keep that going for 5 years, another equally horrible disease will likely now be struggling.
Because don't forget, most people will have donated $5-100 on ALS INSTEAD OF who they usually donate to. There will be some extra for sure, but a lot of people give to the most vocal charity, that is why ALS spends $10mil a year in advertising/promoting/charity events to get donations(three times what they spend in research btw).
ALS is safe, it's secure, it's got more than enough cash to do what they currently do for a donkeys years. That doesn't mean never donate again but, other charities will have people looking for funding for research... should we give $300mil to ALS for $10mil to go out a year, or actually give some money to other charities to get other research done now?
It's also worth remembering that cures and fantastic breakthroughs frequently come from research into completely non related subjects, penicillin, etc. It could be that a piece of research done into parkinson's disease ends up not curing parkinson's but ALS.
Spread the money around, and tell everyone you know that ALS has more than enough and to pick other charities that don't have enough cash.
Pretty much all the "locked in" type syndromes, be that intact brain locked into a body you can't move or control or the other way around, body is pretty much fine but mind is gone, all of them are horrific diseases. Donate to any/all of them.