206 – Chris Velona of North Los Angeles, Father of Two, Including a Son With Batten Disease & Founder of Project Sebastian

Our guest this week is Chris Velona of North Los Angeles, CA. Chris and his x-wife, Teresa, are the proud parents of two boys; Gage (16) and Sebastian (18), who was diagnosed with Batten Disease CLN8, a rare neurodegenerative disorder. We’ll learn about Chris’ journey, which includes his own battle with alcoholism, shouldering the Batten Disease diagnosis, and creating Project Sebastian, a non-profit to support families touched by Batten Disease and rare disease. We also learn about a number of organizations that have played an influential role in their lives, including: Charlotte & Gwyneth Gray Foundation, the Batten Disease Support &

Listen to Podcast