EPISODE · Mar 18, 2026 · 37 MIN
Rare Disease, Real Resilience with Josh Resnikoff
from The Positive Persistence Podcast with Ian Bowen · host joshua resnikoff
In this episode, you’ll discover: 1. What the rare disease journey really means, why 1 in 10 people has a genetic condition, and why the current healthcare system wasn't built to handle it. 2. The story of Josh's son Shiloh, from a sudden 105-degree fever at 18 months to years of unexplained recurring illness and a healthcare system that had no answers. 3. The emotional stages Josh went through: hope, betrayal, guilt, and the community moment that finally shifted him toward action. 4. How to be a fierce self-advocate in the healthcare system, and why sometimes burning the bridge with a doctor who can't help you is the right call. 5. What Josh means by being a "pathological optimist" and how that mindset gets tested and rebuilt through real adversity. 6. The daily habits and tools Josh uses to process setbacks, from talking problems out loud to working out and unstructured time in nature. 7. What pushed Josh from personal pain to building a company, and the role that seeing other ordinary parents change the world played in that decision. 8. How Sunstone Health works and why its technology can deliver what used to take seven years in just 12 weeks. Key Takeaways: 1. You Can't Take No for an Answer: In rare disease and in life, moving past the experts who can't help and finding the ones who can is not optional; it's survival. 2. Community Is the Inflection Point: Isolation keeps you stuck. Finding others on the same journey can shift you from paralysis to action. You don't have to carry the fight alone. 3. Purpose Outlasts Pain: When your mission is personal, giving up isn't an option. Connecting your work to something that truly matters creates a fuel that outlasts every setback. 4. Allow the Bad Day: Suppressing struggle doesn't build resilience. Letting yourself feel it fully, then waking up and going again, is what real grit looks like. 5. The Scientific Method Applies to Life: Fail, observe, adjust, repeat. Getting comfortable with failure isn't weakness; it's the only path that edges you closer to the truth. 6. Overnight Success Takes 10 Years: What looks like a breakthrough is years of invisible work. Build the practices now. The results show up later. 7. Problem-Solve Out Loud: Talking through challenges, moving your body, and giving your mind unstructured time are legitimate and proven strategies for getting back in the fight. 8. Legacy Is Built in the Ordinary: It's not the big milestones but the individual families helped, the team members believed in, and the daily work that defines lasting impact. Timestamps: 00:00 – Introduction to the Positive Persistence Podcast 00:32 – Meet Josh Resnikoff: founder, scientist, and warrior parent 00:47 – What is the rare disease journey? The 7-year diagnostic odyssey explained 03:15 – From biomedical engineer to caregiver: Josh's background and mindset 04:50 – Shiloh's story: years of unexplained fevers and a healthcare system without answers 07:54 – The moment a doctor said "it's not terminal, so don't worry about it" 09:25 – Processing betrayal, guilt, and grief as a rare disease parent 12:02 – Finding community and the inflection point that changed everything 14:48 – How to be a fierce self-advocate without burning every bridge (and when to burn them) 17:50 – Pathological optimism: what it looks like on the hard days 22:38 – Daily habits and tools for resetting after setbacks 27:00 – Why Josh built a company instead of just managing his own family's situation 29:52 – Sunstone Health: the elevator pitch and the 12-week promise 33:30 – Legacy over outcome: why the work matters more than the milestone 36:10 – How to connect with Josh and learn more about Sunstone Health Connect with Josh Resnikoff: LinkedIn: https://www.linkedin.com/in/joshuaresnikoff/ Website: https://www.sunstonehealth.com/ Email: [email protected] CONNECT WITH IAN BOWEN:Website: https://watchmemindset.com/Instagram: https://www.instagram.com/ianrbowen/TikTok: https://www.tiktok.com/@ianrbowenYouTube Channel: https://www.youtube.com/@PositivePersistence-ch8fk Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.
What this episode covers
What do you do when the medical system tells you there is nothing it can do for your child? In this deeply personal and powerfully practical episode, Ian Bowen sits down with Josh Resnikoff, biomedical engineer, founder of Sunstone Health, and fierce advocate for families on the rare disease and complex care journey. Josh opens up about his son Shiloh's years-long undiagnosed illness, the devastating moment a doctor said "it's not terminal, so don't worry about it," and the long road from grief and anger to building a company that is changing the diagnostic odyssey for families around the world. Josh shares what it means to be a warrior parent, how a scientist's mindset shapes his approach to failure, and why his company Sunstone Health can compress a seven-year diagnostic nightmare into 12 weeks. Along the way, he delivers raw, honest lessons on resilience, self-advocacy, community, and the grit it takes to turn personal pain into a systemic solution. This is essential listening for anyone who has ever been told no by a system that was supposed to help them.
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Rare Disease, Real Resilience with Josh Resnikoff
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