In the Fight for a Cure

In this encore conversation for Lessons from Living, featured as part of Podcasthon, Elijah opens up about disease progression, family bonds, and why service gives suffering a purpose. He talks through Right to Try 2.0, how stoic philosophy keeps him centered, and why AI and individualized medicine could speed a cure. It is a clear look at character, resilience, and practical steps forward.

Show Notes & Links

A Small If: The Inspiring Story of a Seventeen-Year-Old with a Fatal Disease and a Mission to Cure It, Elijah J. Stacy

• Website: elijahjstacy.com
• Twitter: @elijahjstacy
• Facebook: @FBelijahjstacy
• TikTok: @elijahjstacy
• Instagram: @elijahjstacy
• Nonprofit: destroyduchenne.org
• Twitter: @destroydisease
• Instagram/Facebook: @destroyduchenne

Episode Outline

• 00:11 – 00:49 — Opening and Podcasthon
  The host frames the theme of giving suffering a purpose and notes that this encore episode is part of a global nonprofit spotlight.
• 00:49 – 01:28 — Meet Elijah Stacy
  A quick reintroduction and nod to his first appearance, with context on Destroy Duchenne and Elijah’s ongoing advocacy.
• 01:39 – 02:56 — What Is Duchenne?
  Elijah explains diagnosis, progression, and why the condition is fatal, highlighting impacts on mobility, heart, and breathing.
• 03:02 – 04:14 — Daily Challenges and Independence
  Honest updates on fatigue, mobility, and the effort it now takes to handle everyday tasks while maintaining independence.
• 05:03 – 06:19 — Family Update
  Check-in on his parents and brother Kai, including a recent clinical trial and how the family is navigating next steps.
• 06:20 – 07:26 — Adversity and Strong Bonds
  How shared struggle creates empathy, teamwork, and deeper connection within his family.
• 07:51 – 09:02 — Destroy Duchenne: Mission and Giving
  The nonprofit’s goals in awareness, funding research, and a giving program that reduces the “disability tax” for affected families.
• 09:13 – 10:52 — From Nonprofit to Biotech
  Elijah’s consulting roles bring lived experience into science and strengthen the human motivation behind research.
• 11:05 – 12:16 — Funding the Path to a Cure
  Why nonprofits help de-risk early work and how capital markets scale promising therapies from preclinical to clinical stages.
• 12:17 – 14:17 — Right to Try 2.0
  An overview of proposed access for patients and physicians to individualized treatments sooner and why it matters for terminal illnesses.
• 14:18 – 17:41 — Policy, FDA, and Testifying
  A bipartisan lens on health policy, respect for the FDA’s role, and Elijah’s testimony in state hearings, including Colorado.
• 18:23 – 21:05 — Purpose, Service, and Fulfillment
  Elijah’s core mission to minimize human suffering and propel human prosperity, with service presented as a path out of despair.
• 21:05 – 23:22 — Mortality, Excellence, and Time
  Why confronting limits clarifies priorities, raises ambition, and increases the value placed on each day.
• 23:22 – 28:12 — Adversity, Expectations, and Parenting
  Thoughts on resilience, appropriate expectations, and how his parents balanced support with high standards.
• 28:12 – 30:22 — Stoicism and the Dichotomy of Control
  Practical ways to reduce anxiety by focusing on what can be controlled and letting go of what cannot.
• 30:25 – 33:11 — AI and Personalized Medicine
  How AI can analyze vast data to accelerate drug discovery and make individualized genetic treatments more feasible.
• 33:14 – 36:46 — Resolve, Faith, and Character
  Elijah’s mindset about a cure, his sense of calling, and the lesson he prizes most: prioritize character.
• 36:48 – 39:56 — New Podcast and Film
  The Destroy Duchenne podcast centers patients and families, and a faith-forward film project aims to inspire at scale.
• 40:00 – 41:15 — How to Support
  Where listeners can learn more and contribute to Destroy Duchenne’s work.
• 41:15 – 42:24 — Closing and Invitation
  A final reflection, gratitude for listeners, and a reminder to subscribe.

Best Quotes from the Podcast

“Don’t let your suffering go unused, use it to help people overcome theirs.” — Elijah Stacy

“My why is to minimize human suffering and propel human prosperity so humanity can have a better quality of life.” — Elijah Stacy

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