Episode Player
Her Daughter's Rare Diagnosis Changed Everything — So She Built a Platform to Change Healthcare
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
#raredisease #patientadvocacy #momentrepreneur #healthtech #winsights #kaseywalsh #hereditaryspasticparaplegia #caregiver #AIinhealthcare #rarediseaseresearch #womeninbusiness #girlwhynotyou #jennieblackwood #podcast #femalefounder
