When her toddler is diagnosed with a rare genetic disorder that disrupts communication, Amanda Gale must learn how to interpret sound without language—and confront systems that don’t know how to listen.

Amanda Gale is a rare disease advocate whose work is deeply shaped by her experience as a parent to a child with an SCN2A-related disorder. She serves as Program Manager for the FamilieSCN2A Foundation, where she leads family support programs, volunteer initiatives, and community engagement efforts that connect families around the globe. Amanda is driven by the belief that no family should face a rare diagnosis alone, and that progress happens when lived experience, research, and community come together.