The BEYOND clinical trial offers hope for people living with TSC and epilepsy: Read Ethan’s story

Ethan Stewart, a 24-year-old musician from Port Macquarie, hasn’t had a single epileptic seizure since joining the BEYOND Clinical Trial 4 months ago, a clinical trial testing the effects of medicinal cannabis on seizure outcomes in people with developmental and epileptic encephalopathy (DEE). The trial, run by the University of Newcastle and Hunter New England Health, uses Epidyolex®, a pharmaceutical-grade CBD oil, and has already made a life-changing difference for Ethan, who has lived with seizures caused by TSC since infancy. Ethan says the CBD oil has improved not just his seizure control but also his mental well-being, confidence, and overall quality of life — calling it life-changing.

The BEYOND Trial is co-designed by patients with epilepsy and is currently recruiting 20 participants across NSW and Canberra — including rural and remote patients — thanks to its fully home-based design.

Read more of Ethan’s story below, and find out more about the BEYOND Clinical Trial here.