Rare Connection

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

April 10, 2024 Joanna Season 2 Episode 5
Rare Connection: Episode 5: Congenital Central Hypoventilation Syndrome (CCHS)
Rare Connection
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Rare Connection
Rare Connection: Episode 5: Congenital Central Hypoventilation Syndrome (CCHS)
Apr 10, 2024 Season 2 Episode 5
Joanna

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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.

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Show Notes Chapter Markers

Send us a Text Message.

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.

Support the Show.

Congenital Central Hypoventalation Syndrome defined
visual description
CCHS prevelance
Nicco's role on the CCHS Family Network inc. board
CCHS diagnosis
Motivation to a broader spectrum
Inspiration for Your Disabled Joy on YouTube
Stereotypes of disabled people
diversity
Projects of the Philedelphia Mayor's commission of Dissabilities
Philadelphia income amd population
Disability Hall of Fame and trustee Hall of Fame rewarding aspects
Off The Record
balancing advocacy with self care
Advice for those with disabilities
hopes and aspirations for the future