Alan Premasiri has worked at the ALS Therapy Development Institute for thirteen years. He is the Director of Clinical Research Operations there, and his team runs a natural history study that collects data directly from people living with ALS.
We asked him eight questions over a video call. What has changed in the field since he started in 2013, why institutes have to share what they find, what the public still misunderstands about ALS, and how close a treatment is.
The answer we keep coming back to was about awareness. He said the useful kind is awareness that groups like his exist, so that somebody who gets diagnosed knows where to turn instead of being left with no direction.
The questions we asked→