Ann: Motor Neurone Disease Phase 1/2 Clinical Trial Update, page-64

To play devils advocate, because it is working clearly working is not the only reason to stay on. These people have no other hope. So if there is a drug that pre-clinical models show potential human benefit AND it is not producing any negative side effects, what have you got to lose by staying on it until at least trial completion? Perhaps they live in hope that it starts exerting effects over a longer timeframe.

I'd definitely like to believe they are seeing clear improvements, and I truly hope for their sake they are. PAA has given some pretty clear between the lines representation to this effect, imo. BUT they could be remaining on through the trial in the hopes that at some point it will replicate pre-clinical models.

Fingers, toes and everything crossed that these people finally have something to give them some real hope to slow this beast of a disease down.