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Rare Disease, Real Resilience with Josh 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/@ianrbowen
YouTube 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.
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By Ian Bowen
5
1010 ratings
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/@ianrbowen
YouTube 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.
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