About this episode

The episode discusses the Terlings' journey in building a foundation for families facing rare diseases, highlighting research, caregiver training, and community impact.

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 ...

People in this episode

Host: Susannah Hodges

Topics covered

• rare disease
• community impact
• caregiver training
• research partnerships
• insurance gaps

Keywords

• rare disease
• foundation
• community
• caregiver
• research
• insurance
• support

Mentioned in this episode

Organizations: Austin 1st Foundation, Aces for Austin, Terlings

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