Radio Show
The Rare Hour
The Rare Hour is a weekly one-hour show airing Tuesdays at 1pm. It’s dedicated
to the voices, stories, struggles, and victories inside the rare disease and special
needs community, with host Christopher Velona, Director of Project Sebastian.
Christopher didn’t choose this journey — it chose him. His son, Sebastian, lives
with Batten Disease, a rare, fatal neurological disorder that primarily affects
children, causing progressive vision loss, seizures, cognitive decline, and motor
skill deterioration. Sebastian's symptoms started at age 5; he was born in 2003. You
Do the math.