340. How to Influence Without Authority: What Nina Frost's Fight for Her Daughter Teaches Us About Leading Change

Guest: Nina Frost, Founder of Rare Hope

THIS WEEK'S TOPIC:

How far would you go to save your child’s life — or to change the future for countless others facing rare disease? When confronted with her daughter Annabel’s rare neurological diagnosis, this week’s guest, Nina Frost, decided to rewrite the playbook. In a conversation rich with hope, resilience, and ground-breaking science, Nina shares how she turned personal crisis into a movement, rallied top researchers, and co-authored research that’s shaping the future of rare disease treatment. If you’ve ever struggled to find purpose in uncertainty, to build influence without a roadmap, or to keep gratitude close in the toughest moments, this episode is for you.

ABOUT THIS WEEK’S GUEST:

Nina Frost is the founder of Rare Hope, a trailblazing organization changing what’s possible for thousands affected by rare neurological disorders. Driven by her daughter Annabel’s diagnosis with alternating hemiplegia of childhood, Nina brought together expert researchers and Harvard scientists, and helped pioneer new approaches by leveraging her unique background, relentless tenacity, and deep compassion for the rare disease community.

KEY TOPICS AND WHAT YOU’LL LEARN IN THIS EPISODE:

BUILDING A MOVEMENT FROM A FAMILY CRISIS: Nina shares her journey from moments of shock and fear after Annabel’s diagnosis, to launching Hope for Annabel (now Rare Hope), and building a scientific and advocacy community.

LEADING WITHOUT A ROADMAP: Learn how Nina applied her management consulting skills to navigate scientific complexity—despite no formal background in medicine or research—and why expertise, curiosity, and connection are critical for influence.

THE PATIENTS-AS-PARTNERS APPROACH: Discover why Nina centers patient experience in research, and how she collects and translates real data from families to guide scientific and clinical priorities.

RALLYING SUPPORT & FUNDING INNOVATION: Nina opens up about building relationships, raising pivotal seed funds, and why simply “having” money can sometimes open more doors than spending it. Plus, hear her advice for fundraisers facing big, uncertain challenges.

THE IMPACT OF COLLABORATION: Explore the extraordinary work with Nobel-worthy scientist Dr. David Liu and how patient organizations like Rare Hope can directly influence ground-breaking gene editing projects.

FAMILY, RESILIENCE & GRATITUDE: Nina discusses the effect of Annabel’s diagnosis on her family — including the challenges facing siblings — and shares hard-won perspective on guilt, grace, and how parents in the rare disease community keep moving forward.

TURNING TRAUMA INTO PURPOSE: Hear Nina’s future vision for genetics and disease research—why rare disease isn’t actually “rare,” and how work in this field can unlock insights for everyone.

There’s inspiration, practical advice, and a new lens for thinking about advocacy and influence in this week’s conversation. I’d love to know what resonated with you. Please connect with us and share your reflections!

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Find Nina and Rare Hope: rare-hope.org

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