Episodes

What if the secret to resilience wasn’t grit, but awe? In a world of chronic conditions and everyday stress, how can families harness wonder and connection as anchors for strength and healing? In this heartwarming and deeply insightful conversation, host Kai M Sorensen sits down with Deborah Farmer Kris—a nationally recognized parenting expert, educator, and author of Raising Awe-Seekers. Together, they explore the powerful role of awe, emotional literacy, and radical curiosity in supporting chi...

In this special episode of Boundless B, host Kai M Sorensen takes listeners inside the 35th Anniversary Symposium of the Coalition for Hemophilia B—a powerful gathering of families, advocates, and healthcare leaders. Recorded live in Orlando, Florida, this episode features moving stories from parents, teens, and new families who share what the Coalition has meant to them. From first-time attendees to long-time volunteers, you’ll hear how education, connection, and community support are transform...

In this powerful episode of Boundless B, host Kai M Sorensen speaks with Alison Betty, longtime public policy expert and co-founder of alignco, about the critical role of advocacy in healthcare—particularly for individuals impacted by Hemophilia B. They explore how healthcare policy is shaped, why misinformation is a growing challenge for patients and providers alike, and how storytelling can cut through the noise to drive real change. Alison stresses that everyone has a story worth telling, and...

In this episode of Boundless B, host Kai M Sorensen sits down with Erik Paulsen, former U.S. Congressman and current Chairman of the Institute for Gene Therapies, to explore the critical intersection of medical innovation, patient advocacy, and healthcare policy. Together, they discuss the growing promise of gene therapies in treating rare diseases like hemophilia b, the urgent need for science-based education, and the power of patient voices in shaping equitable access to care. Paulsen offers i...

This is part two of our special 2024 Volunteers of the Year series, celebrating the incredible individuals who help the Coalition for Hemophilia B thrive. In part one, we highlighted Colin, Fel, and Milinda—if you haven’t listened yet, be sure to check it out! Today, we turn the spotlight on three more inspiring community leaders: Valerie Schneider, Christopher Maddix, and Rick Starks.

Over the next two episodes, we’re celebrating six incredible individuals—our 2024 Volunteers of the Year! In this first part, we highlight the inspiring journeys of Fel Echandi, Milinda DiGiovanni, and Collin Johnson and the lasting impact they’ve made in the Hemophilia B community.

From Silence to Strength: Women and Hemophilia B.

The Gingerbread Tradition.

The Road to Independence and Adulthood.

A Mother’s Hemophilia B and Inhibitor Journey.

The Healing Power of the Drum.

Alternative Funding Programs.

Women and Hemophilia B.

Enhancing Mental Health in Hemophilia B.

Story Time for Children - The Tree of Many Feelings.

Showing Up: The Power of Accountability in the Hemophilia Community.