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Rare Connection: Episode 5: Congenital Central Hypoventilation Syndrome (CCHS)
Manage episode 411877270 series 3485028
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In 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.
章
1. Rare Connection: Episode 5: Congenital Central Hypoventilation Syndrome (CCHS) (00:00:00)
2. Congenital Central Hypoventalation Syndrome defined (00:03:47)
3. visual description (00:04:38)
4. CCHS prevelance (00:04:46)
5. Nicco's role on the CCHS Family Network inc. board (00:05:59)
6. CCHS diagnosis (00:07:30)
7. Motivation to a broader spectrum (00:08:50)
8. Inspiration for Your Disabled Joy on YouTube (00:10:41)
9. Stereotypes of disabled people (00:13:08)
10. diversity (00:14:18)
11. Projects of the Philedelphia Mayor's commission of Dissabilities (00:15:23)
12. Philadelphia income amd population (00:16:42)
13. Disability Hall of Fame and trustee Hall of Fame rewarding aspects (00:17:34)
14. Off The Record (00:20:03)
15. balancing advocacy with self care (00:21:21)
16. Advice for those with disabilities (00:22:49)
17. hopes and aspirations for the future (00:24:56)
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