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

EPISODE · Apr 11, 2024 · 29 MIN

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

from Rare Connection · host Joanna

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

NOW PLAYING

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

0:00 29:12

No transcript for this episode yet

We transcribe on demand. Request one and we'll notify you when it's ready — usually under 10 minutes.

Share this episode

Similar Episodes

No similar episodes found.

Similar Podcasts

The Data Engineering Show The Firebolt Data Bros The Data Engineering Show is a podcast for data engineering and BI practitioners to go beyond theory. Learn from the biggest influencers in tech about their practical day-to-day data challenges and solutions in a casual and fun setting.SEASON 1 DATA BROSEldad and Boaz Farkash shared the same stuffed toys growing up as well as a big passion for data. After founding Sisense and building it to become a high-growth analytics unicorn, they moved on to their next venture, Firebolt, a leading high-performance cloud data warehouse.SEASON 2 DATA BROSIn season 2 Eldad adopted a brilliant new little brother, and with their shared love for query processing, the connection was immediate. After excelling in his MS, Computer Science degree, Benjamin Wagner joined Firebolt to lead its query processing team and is a rising star in the data space. For inquiries contact [email protected]: https://www.firebolt.io Mindi on the Mic: From Stigma to Connection Mindi Bernice Wikstrom Welcome to Mindi on the Mic, where mental health meets real life, and stigma is left at the door. Join your host, Mindi Bernice—a therapist and advocate for authentic conversations—as she dives into the stories, struggles, and triumphs that shape who we are. Whether it's talking through trauma, exploring relationships, or finding faith-based inspiration, each episode brings honest discussions and practical insights for growth. Expect a blend of interviews, Q&As, and storytelling from people of all walks of life, creating a space to break barriers, share experiences, and connect meaningfully. The ZoneCoach® Show Jim Fannin Bringing you extreme positivity on a daily basis, The ZoneCoach® Show gives YOU the opportunity to learn from the very best in the world. Join America’s ZoneCoach®, Jim Fannin, who has been coaching the best in life, business, and sports for over 50 years. This groundbreaking production offers viewers the rare opportunity to learn about the secrets of peak performance. Airing daily, Monday through Friday, around 12:30pm CST, the majority of our shows are LIVE on social media platforms with video. This gives the chance for viewers to interact directly with our host and guests. Become a better parent, sibling, athlete, employee/employer, & overall best version of yourself by tuning into The ZoneCoach® Show! Mobile Hunters Dojo Nolan Taylor The *Mobile Hunters Dojo* aims to provide hunters with a platform for learning and sharing hunting experiences, focusing on mobile hunting techniques and strategies. The podcast is dedicated to helping listeners improve their skills in scouting, adapting to different environments, and being more effective hunters, particularly in the context of public land hunting. It also emphasizes the importance of community and honest, real-world experiences, offering advice from hunters who have firsthand knowledge of the challenges and rewards of the sport. Alongside technical skills, the Dojo encourages personal growth, inspiring hunters to reflect on their journeys, build resilience, and foster a deeper connection to nature and themselves. Through shared stories, challenges, and victories, the Dojo serves as a space for hunters to grow both as skilled hunters and as individuals.
URL copied to clipboard!