Episode Details

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 action

Austin1stfoundation.org