Faith, Family, and the Three E’s: Holly Jones and the Power of Representation in the Myositis Community

Description:

In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Holly Jones — advocate, mother, and leader with The Myositis Association. Diagnosed with polymyositis at just 19 years old, Holly’s journey has been defined by faith, resilience, and an unwavering commitment to others.

Today, she leads multiple initiatives across TMA — including the Women of Color Affinity Group, the Myositis Africa Support Group, and the Chair of the Development Board. Her signature 3E Framework — Encouragement, Education, and Empowerment — has become a model for support and inclusion across the rare disease community.

Together, Richard and Holly discuss:

– Finding hope and faith through chronic illness

– How representation and cultural sensitivity strengthen rare disease advocacy

– Building community through the 3E Framework

– Supporting teens, young adults, and mothers living with myositis

– The importance of equity, empathy, and visibility in rare disease leadership

This heartfelt conversation reminds us that purpose can rise from pain — and that through connection, education, and encouragement, we can all help one another thrive.

🎧 Listen now and discover why Holly Jones embodies the true spirit of Rare Awareness.

For more information, please visit https://www.myositis.org/