Interviews
Interviews.
We ask the people doing ALS research what they work on and what would help. This is the first one.
01 / Alan Premasiri
Alan Premasiri
Director of Clinical Research Operations
ALS Therapy Development Institute ↗September 2026 · 27:49
Alan Premasiri is the Director of Clinical Research Operations at the ALS Therapy Development Institute, where he has worked for thirteen years. His team runs a natural history study that collects data directly from people living with ALS.
He walks through what has changed in the field since 2013, why institutes studying a rare disease have to share what they find, and what the ALS community needs from people who do not work in a lab. His answer about awareness is the one that stuck with us.
What we asked
- 01What first drew you to ALS research, and what has kept you in the field?
- 02What has changed most in the thirteen years since you started?
- 03Why does sharing data between institutes matter so much for a disease like ALS?
- 04What does the general public still misunderstand about ALS?
- 05Which developments are you watching, and how close is a treatment?
- 06Beyond donating, what is the ALS community asking for?
- 07What can students do to raise awareness where they live?
- 08What would you tell a high schooler who wants to do ALS research?