Episode 1: Meet Your Host, Eric
BuzzSprout: https://www.buzzsprout.com/2604852/episodes/19397694
YouTube: https://youtu.be/0hS201PS7qc
Overview
In the debut episode of Roadmap to Rare, host Eric Finn introduces himself and the mission of the show. Roadmap to Rare aims to shed light on the reality of navigating the rare disease journey through real stories, real challenges, and research. Eric shares his personal story of how his family discovered that his son had Okur-Chung Neurodevelopmental Syndrome (OCNDS), an ultra-rare genetic condition affecting approximately 400 people worldwide.
Key takeaways:
- An explanation of what Roadmap to Rare is and its target audience
- Brief introduction to OCNDS
- Eric’s and his family’s journey with:
- Early developmental signs of OCNDS
- Navigating the genetic testing process
- Finding community through the OCNDS Facebook groups and CSNK2A1 Foundation
- Preview of upcoming episodes
Episode highlights:
2:19: Eric’s wife, Miranda, follows her gut feeling that their son, Ronin’s, development is not on track and pushes for answers
3:19 Doctors resist a second round of genetic testing; Eric’s wife pushes back, and they agree
3:42 The second round of genetic testing comes back positive, and Ronin is diagnosed with OCNDS
4:52 Eric’s wife finds two OCNDS Facebook groups and requests to join the parent community
7:12 Eric’s wife is invited to join the CSNK2A1 Foundation’s Parental Advisory Board
9:39 Ronin joins equine therapy
10:15 Eric discusses how he now works at the same Children’s Developmental Center that first evaluated Ronin
12:09 Eric talks about joining a group of five families to advocate for rare disease research before U.S. senators and representatives in Washington D.C.
13:41 Eric reflects on the mindset shift after OCNDS diagnosis
About the Host
Eric Finn is from Gillette, Wyoming and is a father, advocate, and an Early Interventionist at the Children’s Developmental Center of Campbell County and a wrestling and football coach for the Campbell County School District. Eric’s son was diagnosed with OCNDS a month before his third birthday.
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