Girl, Why Not You?
What do you do when your child is diagnosed with a condition so rare that only nine other kids in the world have it — and there's no playbook? Today's guest, Kasey Walsh, lived that reality. After her daughter Robbie was diagnosed with a rare form of hereditary spastic paraplegia at just two years old, Kasey refused to sit on the sidelines. She bought Neuroscience for Dummies, taught herself genetics, co-founded a nonprofit, and connected with researchers at Boston Children's Hospital — all while raising two kids. Now she's the Founder & CEO of Winsights, a groundbreaking patient-powered platform using AI to turn real family experiences into research-grade evidence for rare disease communities. In this episode, we talk about: -The moment that took her breath away — and how she found the strength to keep going -Why families often have to connect the dots that the medical system misses -How she found her voice in rooms full of experts -What she's building with Winsights and why it matters for every rare disease family -Her advice for anyone facing something unexpected: don't say "why me" — say "plot twist" Timestamps: 00:00 — Intro 00:30 — Meet Kasey Walsh 02:16 — The diagnosis that changed everything 04:43 — Navigating the early days as a special needs mom 05:32 — Starting a nonprofit & finding other families 09:16 — Buying Neuroscience for Dummies — the moment she took control 12:16 — What is Winsights? Turning anecdotes into evidence 14:59 — Finding her voice in rooms full of experts 16:28 — Advice for anyone afraid to advocate for themselves 19:36 — "Don't say why me — say plot twist" 20:09 — Where to connect with Kasey & learn about Winsights Connect with Kasey: Winsights: https://winsights.life Website: https://kaseywalsh.com Connect with Jennie: Podcast IG: @girlwhynotyou_ Website: https://girlwhynotyou.com Email: mailto:podcast@jennieblackwood.com [podcast@jennieblackwood.com] #raredisease #patientadvocacy #momentrepreneur #healthtech #winsights #kaseywalsh #hereditaryspasticparaplegia #caregiver #AIinhealthcare #rarediseaseresearch #womeninbusiness #girlwhynotyou #jennieblackwood #podcast #femalefounder
24 episodios
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