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.What You’ll Learn:* Why mental health and substance use support are essential in the bleeding disorders community* The tragic story that sparked a national movement for access* What BD SUMHAC uncovered through their nationwide HTC survey* How stigma and fear create systemic barriers to care* What self-advocates, families, and clinicians can do to access treatment* Resources and action steps for creating change at every levelEpisode Highlights:00:30 – Welcome and introduction to Kate Bazinsky 01:41 – Kate’s public health background and becoming a parent advocate 03:01 – Why no experience is needed to be an effective advocate 05:11 – The story of Derek and the birth of BDSUMHAC 07:05 – National survey: 83% of HTCs report denials for inpatient care 08:16 – Fear, stigma, and confusion around infusion medication 11:05 – When people are told they're “too complicated to treat” 12:11 – Data shows the bleeding disorders community is at high risk 13:59 – Asking for help: why the care team conversation matters 15:56 – The importance of honesty in screening and care 17:36 – What gives Kate hope as a mother 18:04 – New partnership with the National Bleeding Disorders FoundationMeet the Guest:Kate Bazinsky is the mother of a hemophilia a patient, public health expert, and fierce advocate who chairs the Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC). With a background in health policy and a Master’s in Public Health from Johns Hopkins, Kate blends data-driven advocacy with lived experience to lead national efforts improving mental health and substance use access for people with bleeding disorders.Tools, Frameworks, or Strategies Mentioned:* National HTC Survey on access to care* Self-advocacy scripts and resource toolkits from BD SUMHAC* Partnerships with HTCs and the National Bleeding Disorders Foundation* Honest, early, and regular conversations with care teamsClosing Insight & CTA:“A denial is not the end of the story—it’s the beginning of advocacy.”If you or someone you love is navigating mental health or substance use challenges in the context of a bleeding disorder, you are not alone. Start the conversation with your care team, and explore the growing network of resources created by BD SUMHAC to help you access the support you deserve.Resources & Links:* Access Toolkits: https://www.bdsumhac.org/patient-access-toolkit (https://www.bdsumhac.org/patient-access-toolkit)* BD SUMHAC: https://www.bdsumhac.org (https://www.bdsumhac.org)* National Bleeding Disorders Foundation: https://www.hemophilia.org (https://www.hemophilia.org)* Coalition for Hemophilia B: https://www.hemob.org (https://www.hemob.org)* Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/ (https://balancinglifesissues.com/podcast-bli/)

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.What You’ll Learn:* Daily habits that sustain mental and emotional wellbeing* Why consistency beats intensity when it comes to self-care* How to identify early signs of burnout or emotional fatigue* Why asking for help is an act of strength, not weakness* Ways to build accountability and connection in your daily lifeEpisode Highlights:* The phone battery analogy—why maintenance matters* Building daily habits: rest, movement, balance, and boundaries* The courage to say “I need help”* Finding an accountability partner or trusted ally* A one-habit challenge: start small and stay consistent* Final reflection: “The goal is to pour from a full cup, not an empty one.”Closing Insight:Sustaining wellbeing is an ongoing practice—one built on small, intentional steps and shared support.About the GuestLatisha B. Russell is an emotional well-being coach, speaker, and consultant specializing in stress resilience, emotional regulation, and workplace connection. With a compassionate and practical approach, she helps individuals and teams build self-awareness, improve communication, and strengthen emotional health—one mindful moment at a time.Resources:* The Coalition for Hemophilia B: https://www.hemob.org/ (https://www.hemob.org/)* Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/ (https://balancinglifesissues.com/podcast-bli/)* Subscribe to Boundless B on Apple Podcasts: https://pod.link/1765188875 (https://pod.link/1765188875)* WHO World Mental Health Day: https://www.who.int/campaigns/world-mental-health-day (https://www.who.int/campaigns/world-mental-health-day)

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 You’ll Learn:* The difference between “How are you?” and really asking how someone is* How small acts of care build psychological safety* The role of curiosity and non-judgmental listening in bridging differences* Simple ways to show appreciation and reinforce trust* How genuine empathy fosters resilience and belongingEpisode Highlights:* A moment of real connection—what changes when we pause to listen* How to check in without pressure or performance* Everyday ways to make others feel seen and valued* The power of curiosity in breaking assumptions* A challenge for the day: check in with one person—authentically* Closing message: “Even the smallest check-in can make someone feel seen.”Closing Insight:Connection doesn’t require grand gestures. It lives in the small, quiet moments where we truly listen—and care.About the GuestLatisha B. Russell is an emotional well-being coach, speaker, and consultant specializing in stress resilience, emotional regulation, and workplace connection. With a compassionate and practical approach, she helps individuals and teams build self-awareness, improve communication, and strengthen emotional health—one mindful moment at a time.Resources:* The Coalition for Hemophilia B: https://www.hemob.org/ (https://www.hemob.org/)* Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/ (https://balancinglifesissues.com/podcast-bli/)* Subscribe to Boundless B on Apple Podcasts: https://pod.link/1765188875 (https://pod.link/1765188875)* WHO World Mental Health Day: https://www.who.int/campaigns/world-mental-health-day (https://www.who.int/campaigns/world-mental-health-day)

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 You’ll Learn:* Why self-connection is the foundation of emotional well-being* How “pausing with purpose” resets your nervous system* Practical micro-moments that build calm and clarity* How self-awareness strengthens empathy toward others* The science behind presence, compassion, and the simple act of breathingEpisode Highlights:* The oxygen mask metaphor and why self-care matters* Pause with purpose—small daily resets that ground you* Asking yourself the real questions: “How am I feeling?”* How self-awareness builds empathy and compassion* Guided deep breathing for nervous system regulation* Closing reminder: “You can’t pour from an empty cup.”Closing Insight:Taking time to connect with yourself isn’t a luxury—it’s how you refill your strength to support others.About the GuestLatisha B. Russell is an emotional well-being coach, speaker, and consultant specializing in stress resilience, emotional regulation, and workplace connection. With a compassionate and practical approach, she helps individuals and teams build self-awareness, improve communication, and strengthen emotional health—one mindful moment at a time.Resources:* The Coalition for Hemophilia B: https://www.hemob.org/ (https://www.hemob.org/)* Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/ (https://balancinglifesissues.com/podcast-bli/)* Subscribe to Boundless B on Apple Podcasts: https://pod.link/1765188875 (https://pod.link/1765188875)* WHO World Mental Health Day: https://www.who.int/campaigns/world-mental-health-day (https://www.who.int/campaigns/world-mental-health-day)

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 Deb...

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 You’ll Learn:* Why EMS providers are often prohibited from giving critical medication in emergencies* * How to build a local emergency plan that could save your child’s life* * The story behind founding Danny’s Dose and how it’s changing policy in 19 states* * What “being Bob” means and how families can take simple steps to protect themselves* * Why relationship-building (not rage) is key to successful advocacy* * The power of rare disease families working together toward systemic changeEpisode Highlights:* [00:00] Welcome + how Darlene’s family joined the Hemophilia B community* * [03:52] The terrifying realization: emergency protocols don’t always allow life-saving meds* * [05:51] A call to EMS reveals the truth—her family’s plan was the exception, not the rule* * [08:45] Turning frustration into action through state-level advocacy* * [10:45] “If a 3-year-old can mix it, a paramedic can give it.”* * [12:07] Why she didn’t call it advocacy—just common sense and determination* * [14:56] From one condition to 32 million lives impacted by outdated protocols* * [16:52] Action families can take today: visit EMS, build local relationships, and “Be Bob”* * [21:06] Why your call to EMS might ripple all the way to state reform* * [24:44] Announcing the first national EMS guidelines for bleeding disordersMeet the Guest:Darlene Shelton is the founder and president of Danny’s Dose, a nonprofit advocating for emergency protocol reform to ensure EMS providers are equipped and permitted to administer life-saving medications for patients with rare diseases. Her work, born from personal experience, has helped change laws or regulations in 19 states and continues to empower families to become part of the solution.Tools, Frameworks, or Strategies Mentioned:* “Be Bob” protocol: medication, prescription label, emergency orders, medical alert necklace* * State EMS Associations and Medical Directors* * Treatment plans for EMS including helicopter landing procedures* * New National EMS Clinical Guidelines for Bleeding Disorders* * Website resources: 8 Steps to Protection, meeting guides, downloadable toolsClosing Insight & CTA:“Build friendships. Be part of the solution. Don’t go in to blame—go in to create change together.” Your voice matters. Visit your EMS station. Call your state representative. Share your story.

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 insig...

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.Additional Resources:* The Coalition for Hemophilia B (https://www.hemob.org/)* Balancing Life's Issues (https://balancinglifesissues.com/podcast-bli/)This episode is made in partnership with Balancing Life’s Issues.

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. (https://balancinglifesissues.com/podcast-bli/)Additional Resources:* alignco (https://alignco.us/) || Alison Betty (https://alignco.us/person/alison-betty/)* Call your Rep, U.S. Capitol Switchboard: 202-224-3121* https://www.protectcoverage.org/members (https://www.protectcoverage.org/members)* The Coalition for Hemophilia B (https://www.hemob.org/)* Balancing Life's Issues (https://balancinglifesissues.com/podcast-bli/)Key Takeaways:* Advocacy is about using your voice—for yourself and others.* Everyone’s story matters, even if it’s not dramatic.* Misinformation in healthcare creates confusion; seek out multiple sources.* Policy changes often happen in small, impactful steps.* Personal stories create emotional connections that influence decision-makers.* Effective advocacy is a dialogue, not a monologue.* Staying informed on Medicare and Medicaid changes is critical.* Community support amplifies your voice and strengthens the message.

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.

Guest(s): Valerie Schneider, Christopher Maddix, Rick StarksEpisode Overview: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.Valerie Schneider’s journey began when her son was diagnosed with severe Hemophilia B at birth. She has since dedicated herself to ensuring that no family navigating this condition feels alone.Christopher Maddix has been part of the Coalition since his teenage years, living with Hemophilia B and an inhibitor. Through volunteering, he found his voice—becoming an advocate and mentor for others on a similar path.Rick Starks has lived through decades of advancements in Hemophilia B treatment, but it wasn’t until his own daughter’s diagnosis that he fully embraced the community. Through his work with the Coalition and his expertise in Tai Chi and movement, he has helped many manage both the mental and physical challenges of living with Hemophilia B.Though their experiences are unique, Valerie, Christopher, and Rick share a common mission—giving back to the community that changed their lives and ensuring that others receive the support they need.This episode is made in partnership with Balancing Life’s Issues.Additional Resources:The Coalition for Hemophilia B (https://www.hemob.org/podcast)Balancing Life's Issues (https://balancinglifesissues.com/podcast-bli/)

Boundless B: The Hemophilia B Podcast (https://pod.link/1765188875)Guest(s): Fel Echandi, Milinda DiGiovanni, Collin JohnsonEpisode Overview: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.* Fel Echandi’s advocacy started at home when his son was diagnosed with severe Factor IX deficiency. Over the years, he has become a leader in supporting Spanish-speaking families, ensuring that language is never a barrier to care and connection.* Milinda DiGiovanni, both a mother and a carrier of Hemophilia B, has dedicated over 15 years to caregiving, advocacy, and uplifting families nationwide with her infectious joy and laughter.* Collin Johnson has never let Hemophilia B hold him back. An adventurer at heart, he embraces hiking, rock climbing, and snowboarding while mentoring others to show that with the right approach, nothing is impossible. Known as "the ace in the pocket" within the Coalition, Collin is always ready to step up and support the community.Their paths may be different, but they share a common mission—ensuring that the Coalition for Hemophilia B continues to change lives, just as it did for them.This episode is made in partnership with Balancing Life’s Issues.Additional Resources:* The Coalition for Hemophilia B (https://www.hemob.org/)* Balancing Life's Issues (https://balancinglifesissues.com/podcast-bli/)

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.

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 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.