1). My partner Randy Pipkin died at 42 of ALS, after fighting nine years to survive this horrible disease. He was 5`11" and 92lbs when he died. For the last two years, he was completely trapped in his body.
2). ALS is referred to as an "orphan disease," meaning people don't know what it is (unlike cancer and heart disease). That equates to a disease that's underfunded and under-researched.