I'm not an authority on ALS; you know, the stuff that did Lou Gerhig in about 70 years ago.
Actually this disease is just about 100% fatal. Most who have it would rather be put to death in an Oklahoma execution, as that, with all the latest hubbub, demonstrates a 30 minute agonizing death instead of one that might last a year...(Star Wars video below).
The reason ... or one of the reasons...that there is so little support for this, is that 1. There aren't a lot of cases per year and 2. it doesn't "spread" like AIDS or other stuff. Off the topic.
Support someone who is walking if you can or have a mind to. It would, on a personal level, mean a lot to me.