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 In this powerful and deeply personal conversation, AMBER FEDERIZO APRN, DNP shares how language, stigma, and outdated clinical assumptions continue to shape — and often limit — care for women and girls with bleeding disorders.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.

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.

In this heartfelt episode, members of the Hemophilia B community share their personal stories of how music has shaped their journeys. Guests: Bryant Holderried, Izzy Nowlan, Jacqui Maddix, and Maxwell Feinstein reveal the transformative power of music in managing physical and mental health challenges. From offering emotional comfort during tough times to fostering connections and resilience, their inspiring voices highlight music’s role in healing and community building. Bryant Holderried: A lifelong music enthusiast, Bryant shares how music helps his family cope with the challenges of Hemophilia B and strengthens their connection to others. Izzy Nowlan: A young advocate and music lover, Izzy reflects on her diagnosis and how music has impacted her mental well-being and brought her closer to the community. Jacqui Maddix: A mother of two sons with Hemophilia B, Jacqui discusses how music has provided solace and a creative outlet for her family. Maxwell Feinstein: A musician and advocate, Maxwell talks about his active involvement in creating music and how it serves as a powerful tool for expression and connection. Guests discuss the songs and artists that have given them hope, how music helps them cope with uncertainty, and the deep sense of belonging it creates within the community. Whether you’re a music lover, someone navigating life with Hemophilia B, or simply seeking inspiration, this episode offers a powerful message of strength and healing.

n 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 fostering connection, and a special excerpt from the song itself.

In this special episode of Boundless B: The Hemophilia B Podcast, Ashley Zebley and her daughter Madilyn share their intergenerational journey navigating Hemophilia B as women. From battling systemic barriers in healthcare to finding strength in community and advocacy, Ashley offers a powerful perspective on the importance of being heard and validated. Madilyn provides fresh insights on growing up with support and connection in the Hemophilia B community. Together, they discuss the unique mental health challenges women face, the importance of self-advocacy, and how collective voices can drive meaningful change. This episode is a heartfelt reminder that no one is alone in their fight.

In this heartwarming episode, we speak with families from the Hemophilia B community who have made the annual gingerbread house-making event a cherished tradition. Alexandra and Benjamin Haralson, Lori, Austin, and Collin Beaty, as well as Rocky and November Williams, share their personal experiences, exploring what the event means to them and the joy it brings to their families. The conversation dives into the symbolism behind their gingerbread creations, including the stories of how they incorporated the HemoB or IX logos into their designs. These creative touches symbolize their journey with Hemophilia B and demonstrate the sense of pride and community they share. We also discuss how this event fosters a deeper connection within the Hemophilia B community—helping families feel supported, seen, and a part of something greater. From heartwarming stories to memorable moments, each family brings their own unique perspective on how this event helps them feel united. Their stories showcase the power of community and the sense of belonging that comes from shared traditions. It’s a celebration of joy, hope, and togetherness that reminds us all of the strength found in connection.

This episode aims to equip young adults with Hemophilia B and their families with practical tools and real-life insights for navigating the transition to adulthood with confidence. Featuring Matt Barkdull, alongside Nina Duggin and Jenifer Fraker—mothers of young adults with Hemophilia B—listeners will gain valuable perspectives on the journey to independence, mastering self-advocacy, and long-term planning. Through shared stories and actionable strategies, the episode reframes adulthood as an empowering chapter of growth and opportunity, offering concrete advice to tackle this stage with optimism and self-assurance.

In this uplifting and empowering episode, Deena Lipinski shares her 22-year journey navigating her son Tyler’s severe Hemophilia B and inhibitor diagnosis. Deena reflects on the challenges, triumphs, and lessons learned along the way, offering valuable insights for families at every stage of their own journey. From the early uncertainties to advocating for life-changing treatments, her story is filled with resilience, laughter, and the power of self-advocacy. Whether you're just beginning to navigate a bleeding disorder or approaching adulthood, this episode provides hope, inspiration, and practical advice for overcoming obstacles and embracing the future. Bio: Deena Lipinski is the mother of Tyler, a young man with severe Hemophilia B and an inhibitor. For the past 25 years, Deena has supported her son through the challenges and triumphs of managing this rare condition, all while learning to navigate the complexities of parenting without any family history of Hemophilia B. Her early years as a parent were filled with uncertainty and fear, but over time, she has grown into a strong advocate for both Tyler and the broader Hemophilia B community. In addition to her personal experiences, Deena holds a degree in Education from the University of Arizona. She has spent the past five years working as a Patient Advocate with HF Healthcare, where she assists families navigating the complexities of bleeding disorders. One of her family’s most significant milestones came in 2005 when Tyler was desensitized to Factor 9 products through immune tolerance therapy (ITT), after years of advocating for prophylactic options for patients with Hemophilia B and inhibitors. Deena is also dedicated to helping other families by mentoring those affected by inhibitors and assisting women like herself, formerly known as symptomatic carriers, to receive a diagnosis as affected females with Hemophilia. She is one of the founding members of the Arizona Blood Alliance and is affiliated with national organizations like the Coalition for Hemophilia B, the CHES Foundation, the Novo Nordisk Inhibitor Community, and the National Bleeding Disorders Foundation (NBDF). Through her blog, "Blogging About Bleeding Disorders," and as a speaker, Deena shares her family’s story, offering insights, hope, and humor to families facing similar challenges. She now engages in advocacy at the local, state, and national levels, working to raise awareness and support for the bleeding disorders community. As Tyler enters adulthood, Deena reflects on the lessons learned, the fears overcome, and the joy she’s found along the way. Deena currently splits her time between Whitefish, Montana, and Chandler, Arizona.

In this episode of Boundless B, Dr. Robert Friedman discusses how drumming can serve as a therapeutic outlet for individuals, foster group cohesion, and create transformative experiences. In the Hemophilia B community, drumming has become more than just a musical activity—it provides an accessible form of physical expression for those who may face limitations in other physical activities. Bio: Robert L. Friedman, Ph.D., is an author, international speaker, and therapist with over thirty-five years of experience leading workshops, training programs, and keynotes. Awarded the Hearst Scholar Award in 2014 for his innovative work, Dr. Friedman has received national and international media attention, including features on NBC News, The Today Show, and a year-long Discovery Health Channel documentary. He has published three books and over 75 articles on wellness, with interviews in The Wall Street Journal, The Washington Times, U.S. News & World Report, and Self Magazine. Over the past thirty years, he has developed and led more than one hundred seminars and training programs. He is a therapist and trainer with the RWJBarnabas Health Care System and has worked with the Coalition of Hemophilia B for over eight years, delivering programs internationally.

Here in the United States, health insurance is supposed to protect patients from the financial burden of expensive medical treatments. But all too often, it falls short—especially for those who rely on costly prescription medications. Now, a new trend is making things even harder. Third-party vendors are pushing what's called 'alternative funding programs,' and they're specifically targeting high-cost specialty drugs. If these programs continue to spread unchecked, they could cause real harm—leaving patients even more vulnerable, straining the healthcare system, and further complicating an already broken drug pricing market. It's a serious issue that needs attention.

Danielle Nance, MD, a hematologist with firsthand experience of hemophilia A, leverages her unique perspective to advance clinical knowledge and enhance care for individuals women with hemophilia B.

Explore the profound influence of community on mental health with clinical psychologist Mina Nguyen-Driver, PsyD in our latest episode of the hemophilia B podcast, Boundless B. Gain valuable insights into how supportive networks can enhance well-being and resilience in individuals living with hemophilia B.

EIn this episode of the Boundless B podcast, brought to you by the Coalition for Hemophilia B, we dive into "The Tree of Many Feelings," a heartfelt story that helps children explore and understand their emotions. Join us as we journey through a day in the life of a tree, experiencing happiness, sadness, fear, and anger. Through this story, we encourage young listeners to identify and name their own feelings, while learning the power of mindfulness and deep breathing to navigate challenging emotions. Plus, don't miss the special art challenge at the end, where kids can express their emotions creatively!

In this episode of the Boundless B podcast, we’re joined by Wendy Wollner, CEO of Balancing Life Issues and a passionate advocate for the hemophilia community. Wendy's connection to the community is deeply personal, as her father lived with hemophilia. She shares valuable insights on the importance of accountability to oneself and others and how this principle strengthens the foundation of the hemophilia community. Wendy emphasizes the critical need to show up, keep your word, and be reliable in all aspects of life. By doing so, we support each other and contribute to the community's continued growth and resilience.