In this powerful episode of Rockin’ the Difference, I sit down with my dear friend Chris Velona — a devoted father, rare disease advocate, and founder of Project Sebastian, a nonprofit inspired by his son Sebastian, who was diagnosed with Batten disease, a rare and terminal neurodegenerative disorder.

Chris shares his family’s emotional journey, the heartbreaking diagnosis, and how he chose to turn pain into purpose by creating a platform for awareness, connection, and hope. We talk about the emotional toll of caregiving, and what it's like to live day by day when the future is uncertain — yet still filled with love.

Chris also introduces us to tools and communities that have been a source of support, including:

🔗 Project Sebastian: A nonprofit raising awareness and funding for Batten disease and other rare conditions

⚡️ BioRecharge Energy Enhancement Systems: Alternative wellness technology supporting cellular healing and energy

💊 Mila’s Miracle Foundation: Advocating for individualized, gene-targeted medicine to treat rare genetic disorders

This episode is for any parent walking a rare or uncertain path — and for anyone who needs a reminder that purpose can rise from even the darkest days.

If this episode moved you, please rate, review, and share. You never know who needs to hear this story.