Dad to Dad 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 & 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/ Email- [email protected] Project Sebastian – https://www.projectsebastian.org Phone – (661) 414-4856Charlotte & Gwyneth Gray Foundation - https://www.curebatten.org BDFA – http://www.bdfa-uk.org.uk/ Batten Disease Support & Research Association (BDSRA) – https://www.bdsra.org/ Special Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 500+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations. Special Fathers Network: https://21stcenturydads.org/about-the-special-fathers-network/Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA Please support the SFN. Click here to donate: https://21stcenturydads.org/donate/