Causepods

Sebastian Velona is a happy kid. He is tough and resilient in the face of adversity, something many kids his age struggle to embody. Sebastian has it especially tough, however. He was diagnosed at a young age with the CLN8 variant of Batten Disease, a rare genetic condition that causes seizures, blindness, and cognitive decline. After Sebastian received the diagnosis, his father, Christopher, did what any caring parent would do: he exhausted all avenues in search of treatment options, and when he didn’t find what he was looking for, he spearheaded his own movement to fundraise for the development and research of groundbreaking new ways to treat the disease. The creation of Project Sebastian has lead Christopher to knock on the doors of senators, create The Project Sebastian Podcast, and most importantly, generate a caring community for those living with Batten Disease and their families. The number of people living with Batten Disease today is inconclusive, as is the prospect for a cure. However, that does