Ep.#112: Austin 1st Foundation

We share how Austin’s life and a years-long search for answers led the Terlings to build a foundation for families facing rare disease. We dig into research partnerships, caregiver training, and the Aces for Austin golf scramble that turns community into impact.• one in ten Americans affected by rare disease • Austin’s UBA5 journey from birth to diagnosis • the four pillars: research, awareness, change, support • insurance gaps and noncovered equipment and therapies • funding drug repurposing for UBA5 • support for UAB’s Undiagnosed Diseases Program • Children’s of Alabama PICU expansion and COACHES training • Aces for Austin event details and growth • volunteer-run model and near net-zero event costs • how stories personalize statistics and drive actionAustin1stfoundation.org