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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.

Chapter Markers

00:00 Intro
03:33 How CCHS effects Nico's daily life
05:43 Nicco;s role on the board at the CCHS Family Network
07:21 Diagnosis journey
08:40 Why Nico left the CCHS Family Network
10:29 Why Nico started Your Disabled Joy
14:09 What Noco has learned from his gyests
15:14 Projects Nico is working on As the Philidelphia Mayirs Commission on people with disabilities
17:27 Nico's Most rewarding aspects of his involvment with Awsome disability
19:52 Nico's Support group Off The Record
21:15 balancing advocacy work & self care
22:44 Advice for others
24:51 Hopes for the future of disability Advocacy advocacy
27:21 Conclusion

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