Episode 6: Going the Distance for OCNDS Awareness ft. Kevin Pilgrim

Overview


In Episode 6 of Roadmap to Rare, host Eric Finn is joined by Kevin Pilgrim, an OCNDS parent from the UK. Kevin’s son, Hunter, was diagnosed with OCNDS in 2021. Kevin shares his family’s road to a diagnosis, the relief of finding the CSNK2A1 Foundation and its community of parents, and how he turns endurance challenges into fundraising efforts that raise awareness for OCNDS. He also reflects on what he’s learned along the way about supporting Hunter’s younger brother, celebrating small wins, and staying hopeful. 


Kevin's next fundraiser, running 5K every hour for 48 hours will be from September 11–13, 2026: https://www.justgiving.com/page/5k-everyhour-48hours?u


Key takeaways:


  • The road to an OCNDS diagnosis for Hunter
  • How finding the CSNK2A1 Foundation connected Kevin and his family with a wider community of OCNDS parents
  • Why Kevin turned endurance challenges into fundraising and awareness efforts
  • Information about Kevin’s upcoming 48-hour running challenge and fundraiser, taking place September 11–13, 2026
  • Reflection on supporting siblings of individuals with OCNDS, celebrating “inch stones”, and other advice for newly diagnosed families


Episode highlights:


1:13 The challenging journey to Hunter’s birth

7:27: Hunter’s difficult first week after birth

10:15: Noticing missed milestones and trusting a parent’s intuition

11:38: The genetic testing journey begins 

14:01: Getting an OCNDS diagnosis at age five

16:29: Finding the CSNK2A1 Foundation

17:28: Turning endurance challenges into fundraising: “I can suffer really well”

18:40: Kevin’s first endurance challenge and fundraiser: cycling 500 km in 24 hours

19:56: Kevin’s upcoming fundraiser: running 5 km every hour for 48 hours

24:22: Raising awareness for OCNDS from the top of a mountain 

27:39: Advice for anyone considering doing a fundraiser

30:06: Closing advice: celebrating “inch stones” and building a strong team 


Like, subscribe, and share wherever you listen to podcasts. New episodes every two weeks.

Listen to this episode

Episode Transcript

View Full Episode Transcript Here