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 & Research Association, and Sebastian Velona Foundation, started by Teresa Fox, Sebastian’s mom.
It’s a fascinating story and one we’ll hear this week on the Special Fathers Network Dad to Dad Podcast.
LinkedIn – https://www.linkedin.com/in/christophervelona/
Project Sebastian – https://www.projectsebastian.org
Phone – (661) 414-4856
Charlotte & Gwyneth Gray Foundation – https://www.curebatten.org
BDFA – http://www.bdfa-uk.org.uk/
Batten Disease Support & Research Association (BDSRA) – https://www.bdsra.org/