Boundless B Podcast

New York State Senator Joseph P. Addabbo, Jr. has been one of the most consistent allies our community has in Albany. He sits down with Kai to talk about how one constituent meeting changed the way he sees bleeding disorders legislation, why step therapy reform matters, what his Java with Joe coffee meetings are really like, and the message of hope he carries into a tense political moment.

In this practical and reassuring episode of Boundless B, Kai M Sorensen speaks with Dr. Douglas Hutchinson, a practicing dentist and father of a son with severe hemophilia B, about a topic many families quietly worry about: dental care. Together, they unpack why brushing, flossing, and dental visits can feel intimidating in the bleeding disorders community — and why avoiding them can create bigger...

What if the biggest barrier to care isn’t access — but the words we use? In this powerful and deeply personal conversation, AMBER FEDERIZO APRN, DNP shares how language, stigma, and outdated clinical assumptions continue to shape — and often limit — care for women and girls with bleeding disorders. Drawing from both her clinical expertise and a life-threatening personal experience, Dr. Federizo ch...

In Part 2 of this powerful two-part series, Dana Kuhn’s story moves from private devastation to public accountability. After losing his wife because Dana unknowingly contracted HIV through contaminated blood products, Dana began uncovering internal documents that suggested warnings about blood safety existed earlier than families were ever told. What began as counseling work inside a hospital quie...

What happens when life-saving treatment becomes life-altering — and the systems meant to protect families move too slowly to prevent harm? In Part 1 of this powerful two-part series, Dana Kuhn shares the deeply personal story that would shape a lifetime of advocacy. Set against the early years of the AIDS epidemic, this episode traces Dana’s journey from a newly ordained minister and young father...

Music heals.

In this moving episode of Boundless B: The Hemophilia B Podcast, Adam Smith and Shelby Smoak share the behind-the-scenes story of recording ‘We Are the World’ in Nashville, TN.  Through their reflections, listeners will hear how music brought the community together, empowering voices and fostering connection. Listeners will hear reflections on the recording experience, the importance of music in f...

In this moving conversation, Dr. Mosi Williams shares his lived experience with Severe Hemophilia A and the mental health journey that shaped his path as a clinical social worker and community advocate. From navigating early trauma and grief during the HIV/AIDS crisis to helping others find strength in vulnerability, Mosi brings deep wisdom to the emotional side of living with a bleeding disorder....

What if the strongest form of advocacy wasn’t a protest—but a shared story around a table? In this special Boundless B conversation, we explore how showing up, connecting, and supporting one another can be the most powerful act of all. Dr. Whitley Grant-Goodman, licensed clinical mental health counselor and addiction specialist, joins us to reflect on her recent session at the Coalition for Hemoph...

The holidays can be joyful, but for families living with Hemophilia B, they can also bring heightened stress—emotionally, physically, and logistically. In this powerful episode, Dr. Shaleen Kendrick, creator of the Neuro-Relational Integration™ model, joins Kai to offer science-backed tools to help regulate the nervous system during times of overwhelm. Whether it's managing expectations, sensory o...

What do you do when your baby is born covered in bruises, and no one has answers? In this episode, Mandy Aberegg shares her powerful journey as a mother of two children with Hemophilia B—and how she turned fear into fierce advocacy. Her story will leave you inspired, informed, and ready to take that next brave step forward.

When Kate Bazinsky received the call that a young man with Hemophilia had died by suicide after being denied by substance abuse and mental health treatment, she knew something had to change. In this powerful episode, Kate shares how that loss catalyzed the creation of the Bleeding Disorders Substance Use and Mental Health Access Coalition (BDSUMHAC). We explore the stigma, fear, and policy gaps th...

How do you recharge your mental battery before burnout hits? In the final episode of this three-part series, Latisha B. Russell focuses on sustainability—the small habits that keep us grounded and the courage it takes to reach out for help. Drawing parallels between phone batteries and mental health, Latisha reminds us that consistent care—not crisis response—is what keeps us strong.

How can one small, genuine question change someone’s entire day? In part two, Latisha B. Russell explores the power of simple, culturally neutral connections—both at work and in our personal lives. From authentic check-ins to curiosity-driven listening, this episode highlights how compassion in action builds stronger communities, one small gesture at a time.

What does it really mean to “put your own oxygen mask on first”? In this opening episode of the World Mental Health Day series, emotional well-being coach Latisha B. Russell invites us to slow down and reconnect—with ourselves. Through powerful analogies and simple daily practices, Latisha explains why self-connection isn’t selfish, it’s essential. When we pause with purpose, we create space for e...

What does it mean to save a life—not just with medication, but with dignity, opportunity, and hope? In this deeply moving episode, we sit down with Cindy Komar, Executive Director, and Debbie de la Riva, Ambassador Program Coordinator at Save One Life, to explore how one sponsorship, one connection, and one act of compassion at a time is transforming lives for people with bleeding disorders in und...

What happens when the systems we rely on fail in an emergency? In this powerful episode, host Kai M Sorensen speaks with Darlene Shelton, founder of Danny’s Dose, about the terrifying realization that EMS responders are often not permitted to administer life-saving medications carried by individuals with rare diseases—including those with Hemophilia B. What began as a grandmother’s attempt to prot...

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...

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...

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...

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-ba...

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.