Boundless B Podcast

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 quietly transformed into an investigation. Through Freedom of Information Act requests, stacks of CDC memos, and collaboration with activists and lawmakers, Dana built what became known as “The Trail of AIDS.” That trail helped trigger an Institute of Medicine investigation, contributed to the Ricky Ray Hemophilia Relief Fund Act, and led to the establishment of the nation’s first Blood Safety Council.

But this episode is not just history.

Dana is speaking out again because key blood safety oversight bodies have recently been dismantled. The guardrails built from tragedy, he warns, can be weakened faster than people realize.

This is a story about accountability, organized community power, and why blood safety is not a policy debate — it is a promise.

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 with mild hemophilia to a caregiver navigating fear, stigma, and devastating loss.

After a routine injury leads to his first factor infusion, Dana becomes critically ill — contracting hepatitis through the blood supply at a time when safety systems lagged behind emerging risks. What follows is a cascade of uncertainty: an HIV diagnosis, incomplete public health information, and the heartbreaking realization that his wife is also gravely ill.

Through moments of medical neglect, visible stigma, and advocacy born out of desperation, Dana’s story reveals what families in the hemophilia community know all too well — when a diagnosis enters a home, it reshapes every relationship, every decision, and every sense of safety. This episode honors the caregivers who fight when fear takes over rooms meant for healing, and it lays the emotional foundation for the advocacy work that would eventually become Patient Services, Inc.

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. Listeners will walk away with a renewed understanding of resilience, connection, and the importance of asking for help.

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 Hemophilia B’s Meetings on the Road event in Charlotte, NC. Together with host Kai M Sorensen, they explore how the power of shared experience, caregiver validation, and accessible advocacy can create life-changing community moments. Whether you’ve been managing Hemophilia B for decades or are new to the journey, this episode reminds you: You are not alone—and the community is waiting with open arms.

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 overload, or navigating emergency preparedness, this conversation offers actionable strategies to help families return to peace, presence, and hope.

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 that keep people with bleeding disorders from receiving the care they deserve—and the inspiring ways advocates are breaking down those barriers through data, tools, and hope.

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.