In this episode Kasey Walsh explains how simple social media connections grew into formal research collaborations, a nonprofit, and a patient‑owned data platform, all motivated by her determination to help her daughter Robbie, who was born with an AP-4 hereditary spastic paraplegia (AP‑4 HSP).

She has partnered with institutions like Boston Children's Hospital, the Broad Institute, and the University of Cambridge to move AP‑4 from case reports to research action.

Kasey co‑founded Cure AP‑4 and created WinSights to turn caregiver stories into research data that supports precision medicine. Her work helped find biomarkers, reclassify patients once thought to have cerebral palsy, and start drug‑repurposing studies that identified existing FDA‑approved medicine ...