Leap Together Podcast: Episode 1 Christine Gustafson

Summary

In this episode of Leap Together, host Zach Gobst, CEO of Leapcure, sits down with Christine Gustafson, Founder and CEO of the Thyroid Eye Disease (TED) Community Organization, the only nonprofit exclusively focused on TED.

Understanding TED

Diagnosed in 2009, Christine faced a challenging and isolating journey. At that time, Thyroid Eye Disease was poorly understood and often mistaken as merely a symptom of Graves’ Disease. She experienced physical changes, including severe eye protrusion, which led to social stigma and isolation for nearly a decade.

From Patient to Advocate: Building a TED Community

Christine’s advocacy journey began after connecting with other TED patients through a clinical research council, sparking her passion for patient support and advocacy. Realizing the profound isolation many TED patients faced, she founded the TED Community Organization, providing a safe, empathetic space for patients worldwide. Her nonprofit offers:

• Educational resources
• Peer support groups
• Artistic expression programs
• Clinical trial awareness and participation
• Quality-of-life enhancement initiatives

The TED community helps patients overcome fear and isolation, empowering them through connection and shared experiences.

Entrepreneurial Insights for Advocacy Leaders

Christine shares valuable insights into building an advocacy organization organically by responding directly to patient needs. She emphasizes the importance of:

• Flexibility and adaptability
• Fearless experimentation
• Authentic community engagement
• Continuous learning and curiosity

Zach and Christine explore parallels between entrepreneurship and advocacy, highlighting how openness to new ideas and strategic responsiveness drives impactful community growth.

Leadership and Patient Engagement in Clinical Research

Christine discusses the importance of patient involvement in clinical research, illustrating how her organization actively participates in clinical study reviews and helps facilitate patient engagement in research studies. The TED community demonstrates the critical role of patient advocacy in advancing medical understanding and treatments.

Conclusion: Empowerment Through Community and Advocacy

Christine underscores the transformative power of community and shared patient stories. She advocates for a courageous, curious approach to life and patient advocacy, highlighting how meaningful connections drive awareness and progress in treating Thyroid Eye Disease.