Boundless B Podcast

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 In this powerful and deeply personal conversation, AMBER FEDERIZO APRN, DNP shares how language, stigma, and outdated clinical assumptions continue to shape — and often limit — care for women and girls with bleeding disorders.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 challenges long-standing terminology like “carrier,” exposes how bias shows up in emergency care, and offers a clear path forward: better questions, better language, and stronger advocacy. This episode is about more than medicine. It’s about being heard. From rural Nevada to national clinical trials, Amber Federizo is helping redefine what equitable care looks like — and why it’s long overdue.

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.

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 empathy, balance, and resilience—both in our personal lives and across our community.

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 underserved countries. From scholarships and business grants to life-saving medication and emotional healing, this episode uncovers the ripple effect of empathy—and how you can be part of it.

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 protect her grandson Danny after his diagnosis has grown into a national movement for emergency protocol reform. Darlene shares how an unexpected conversation with Coalition President Wayne Cook opened her eyes to a dangerous gap in care—and how she turned fear into focused, inclusive, and deeply respectful advocacy. Her message: You don’t have to be an expert to make change—you just have to show up.

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 children and caregivers navigating life with rare and chronic conditions like Hemophilia B. From practical strategies to moving personal reflections, this episode is an invitation to reconnect with what lights us up—especially when life feels heavy.

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 transforming the lives of those living with Hemophilia B. Whether it's the relief of finally feeling seen, the power of mentorship, or the energy of being together in person, these moments reveal the heart and soul of the Coalition.

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 that even small efforts—like calling your representatives—can make a big difference. Whether you're navigating Medicare, Medicaid, the ACA or private insurance, this episode offers guidance, inspiration, and a call to action for anyone ready to engage in meaningful patient advocacy and community engagement. This episode is made in partnership with Balancing Life’s Issues.

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 insight into the bipartisan momentum around gene therapy policy, the complex challenges of regulatory approval, and how everyday citizens can engage in advocacy—sometimes with something as simple as a letter. This episode offers inspiration and a call to action for listeners committed to making change in the rare disease community.