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 not stop Christopher, but rather fuels his mission to find one.
In this episode Christopher discusses how his son’s disease was the catalyst to go above and beyond, finding his own answers when he was told there were none. He ruminates on the ways that creating a podcast as a part of his mission to help his son has in fact helped him to overcome his own fears, and opened their family to a greater community that holds the same goal close to their hearts. Above all, Christopher emphasizes the value of awareness – that in the face of a seemingly bleak diagnosis, sharing his family’s story has been the greatest asset in making progress towards finding a cure.
Christopher describes what Batten Disease is. [01:18]
Christopher’s personal relationship with Batten Disease. [01:42]
The impetus to start The Project Sebastian Podcast. [04:41]
How many people are affected by Batten Disease. [05:24]
Current research on treatment options. [06:53]
Sebastian’s story. [08:09]
Why podcasting has been a great platform for support. [10:26]
Advice for others considering podcasting to support their cause. [15:24]
How to support Project Sebastian and those affected by Batten Disease. [17:52]
The importance of getting your politicians involved. [18:50]
The value of awareness. [20:06]
See the show notes at http://www.causepods.org/podcast/project-sebastian