Rare Connection: Episode 5: Congenital Central Hypoventilation Syndrome (CCHS)

Send us Fan MailIn this episode I talk with Nico who has Congenital Central Hypoventilation Syndrome (CCHS).  Nico worked for CCHS Network inc.  which his mother started.  He revamped the website and planned a global conference for CCHS patients.  After losing friends to CCHS he decided to branch out and work with people with disabilities at large.  He became a guest on podcasts, and started his own series now on YouTube called “Your Disabled Joy.”  Join me as I talk with Nico about his journey both past and present and about CCHS.Chapter Markers00:00 Intro03:33 How CCHS effects Nico's daily life05:43 Nicco;s role on the board at the CCHS Family Network07:21 Diagnosis journey08:40 Why Nico left the CCHS Family Network10:29 Why Nico started Your Disabled Joy14:09 What Noco has learned from his gyests15:14 Projects Nico is working on As the Philidelphia Mayirs Commission on people with disabilities17:27 Nico's Most rewarding aspects of his involvment with Awsome disability19:52 Nico's Support group Off The Record21:15 balancing advocacy work & self care22:44 Advice for others24:51 Hopes for the future of disability Advocacy advocacy27:21 ConclusionSupport the show