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 You’ll Learn:* How early trauma and grief shape mental health for those with bleeding disorders* The emotional toll of being misunderstood or unseen as a child with hemophilia* Practical signs that someone may need professional mental health support* The power of shared experience, safe spaces, and storytelling* Why community connection is a vital tool for emotional wellness* How to normalize seeking support without stigma or shameEpisode Highlights:* (00:57) Mosi’s diagnosis and growing up during the HIV/Hepatitis crisis* (03:58) Shame, school avoidance, and the fear of being different* (05:01) The first therapy session—and feeling unseen* (06:36) Tools for daily mental wellness: connection and gratitude* (08:36) Grief and loss at summer camp: the impact of losing peers* (10:37) Creating safe spaces for conversations about depression and suicide* (13:06) Warning signs that professional help may be needed* (14:44) Final message: It's okay to ask for helpMeet the Guest:Dr. Mosi Williams is a Licensed Clinical Social Worker at the UCSF Adult Hemophilia Treatment Center. Living with Severe Hemophilia A with an inhibitor, Mosi has spent over 30 years advocating for the bleeding disorders community through summer camps, global speaking engagements, and mental health leadership. He serves on the boards of the Bleeding Disorders Foundation of Northern California and the Hemophilia Council of California.Tools, Frameworks, or Strategies Mentioned:* 988 Suicide and Crisis Lifeline* Creating safe spaces through lived experience* Listening for repetition and hopelessness as signs of emotional distress* Building community support through mentorship and events“We all have challenging times—and there is a path to support. Mental health needs care just like physical health. You are not alone.” - Dr. Mosi WilliamsResource Links:The Coalition for Hemophilia B – https://www.hemob.org/ (https://www.hemob.org/)eventsBalancing Life's Issues – https://balancinglifesissues.com/podcast-bli/ (https://balancinglifesissues.com/podcast-bli/)Call the 988 Lifeline or visit https://988lifeline.org/ (https://988lifeline.org/)At the 988 Suicide & Crisis Lifeline, we understand that life's challenges can sometimes be difficult. Whether you're facing mental health struggles, emotional distress, alcohol or drug use concerns, or just need someone to talk to, our caring counselors are here for you. You are not alone.

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.What You’ll Learn* Why community-building is essential for mental health and healing* How vulnerability and trust can grow quickly in shared spaces* The emotional power of in-person connection (and how to access it)* Why advocacy isn’t always loud—and how to practice it in everyday life* How caregivers can support their own mental and emotional health* What attendees walk away with from a Meetings on the Road event Episode Highlights[01:29] What it felt like to lead a Stronger Together session in person[03:09] Why in-person connection deepens emotional healing[04:15] The ripple effect of shared stories and vulnerability[06:34] Advocacy, support systems, and the power of laughter[08:33] Redefining advocacy—what it looks like in everyday life[10:45] How local advocacy and small actions can move change[11:40] Centering caregiver voices and the importance of self-advocacy[13:35] A final message for anyone who couldn’t attend in personMeet the GuestDr. Whitley Grant-Goodman is a licensed clinical mental health counselor and licensed clinical addiction specialist based in Durham, NC. With over a decade of experience supporting adults with anxiety, perfectionism, substance misuse, and boundary setting, she operates a fully virtual practice and leads trainings nationwide. Whitley is also a doctoral candidate researching the experiences of women of color and racial trauma.Tools, Frameworks, or Strategies Mentioned* Meetings on the Road by the Coalition for Hemophilia B* Self-advocacy through medical preparation and questioning* Peer-to-peer community building* Local advocacy through connection with elected officials* Caregiver support through story-sharing and validationClosing Insight & CTA“You don’t have to organize an event to build community. You can start with one honest conversation or one supportive meeting.” - Dr. Whitley Grant-GoodmanFind your people. Show up for yourself. And remember—hope and healing begin with connection.Resource & LinksCoalition for Hemophilia B – https://www.hemob.org/ (https://www.hemob.org/)Meetings on the Road Information – https://www.hemob.org/meetings-on-the-road (https://www.hemob.org/meetings-on-the-road)Balancing Life’s Issues – https://balancinglifesissues.com/podcast-bli/ (https://balancinglifesissues.com/podcast-bli/)Boundless B Podcast Page – www.hemob.org/podcastDr. Whitley Grant-Goodman: https://www.linkedin.com/in/whitleygrantgoodman/ (https://www.linkedin.com/in/whitleygrantgoodman/)

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.This episode is made in partnership with Balancing Life’s Issues.What You’ll Learn:* Why the holidays often trigger stress and sensory overload* The science behind the body’s three brains—and how they relate to stress* A step-by-step grounding exercise you can do anytime, anywhere* How co-regulation with loved ones builds trust and resilience* Why preparation (like a go-bag and emergency plans) can be calming* How shifting from perfection to wholeness-making reduces stressEpisode Highlights:00:59 – Why holiday gatherings are so emotionally complex03:29 – Awareness is the first step: noticing stress in the body04:27 – A full 5-4-3-2-1 grounding technique to calm the nervous system06:45 – How regulation practice improves over time08:20 – Rewiring the brain through neuroplasticity and integration09:38 – Creating “polyvagal partnerships” with your loved ones11:23 – 20-second hugs, safe signals, and co-regulating with children12:39 – Replacing perfectionism with “wholeness-making”15:00 – Emergency preparedness tips that support nervous system calm16:16 – A closing message of hope and dynamic balanceMeet the Guest:Dr. Shaleen Kendrick, ThD, is the creator of the Neuro-Relational Integration™ Model (NRI), blending neuroscience, psychology, and practical wisdom to help people access their full intelligence—mind, body, and spirit. Her work supports individuals and families navigating chronic stress, trauma, and medical challenges, offering science-backed pathways to healing, integration, and wholeness.Tools, Frameworks, or Strategies Mentioned:* The 5-4-3-2-1 Grounding Technique* The Neuro-Relational Integration™ Model (NRI)* Polyvagal Theory and Polyvagal Partnerships* Enteric Nervous System and Gut-Brain Regulation* “Wholeness-Making” as an antidote to perfectionism* Emergency Preparedness Tips from Danny’s DoseClosing Insight & CTA:“There’s hope in every moment. As you practice integration and start to re-regulate, you create a new possibility—not just for yourself, but for everyone around you.” - Dr. Shaleen KendrickTake a breath, find the moment, and remember: you’re not alone in this. For more tools and stories, visit www.hemob.org (https://www.hemob.org/podcast)Resource Links: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/)Danny’s Dose Emergency Preparedness – https://www.dannysdose.org/emergency-preparedness (https://www.dannysdose.org/emergency-preparedness)

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.Episode OverviewWhen Mandy Aberegg’s first child was born, she had no idea she was a spontaneous carrier of Hemophilia B. What followed was a whirlwind of misdiagnoses, medical fear, and hard-earned lessons in advocacy. In this heart-opening conversation, Mandy shares the emotional and practical journey of parenting two kids with bleeding disorders, learning to stand up to doctors, and finding community through the Coalition for Hemophilia B. Her story is a testament to resilience, maternal strength, and the power of speaking out.What You’ll Learn* Why trust your instincts—and demand answers—when your child’s health is at risk* The emotional toll and transformation that follows an unexpected diagnosis* How one mother learned to speak up to doctors, ask the right questions, and demand better care* The importance of community, camps, and connection for children and parents alike* How the Coalition for Hemophilia B helps families feel seen, heard, and empowered* What to do when you feel overwhelmed, scared, or unsure about the futureEpisode Highlights* [00:49] Mandy shares how her son’s bleeding wouldn’t stop after birth* [01:34] The emotional moment when doctors said “something is wrong with your son”* [02:15] What it’s like to parent through fear and confusion in the early days* [04:51] Deciding to have another child despite unknowns—and what happened next* [06:56] Fighting to get her daughter’s mild hemophilia diagnosis taken seriously* [07:56] Discovering the Coalition for Hemophilia B and attending her first symposium* [08:18] The life-changing moment when 800 people said “yes” to her daughter having factor at home* [09:08] How Mandy built a care plan and learned to advocate effectively* [10:39] Advice for new families on being heard in the doctor’s office* [11:21] Why camp matters—for confidence, independence, and pride* [12:49] Preparing for the day your child manages their care on their own* [13:42] What Mandy would tell her past self: “Join the Coalition. You are not alone.”Meet the GuestMandy Aberegg is a devoted mother, fierce advocate, and respected voice in the Hemophilia B community. After a surprise diagnosis in her first child and later in her daughter, Mandy transformed fear into empowerment—learning how to stand up to healthcare providers, advocate for her family, and connect others to the community and resources that changed her life. Today, she’s a proud parent, mentor, and shining example of resilience.Tools, Frameworks, or Strategies Mentioned* Notebook of questions: A beginner’s tool for overwhelmed parents* Symposium & community events: Fuel for empowerment and education* Infusion training through camp: Building confidence and independence in kids* School and doctor communication plans: Essential advocacy strategies* Factor at home: A must-have that many don’t realize they can ask forClosing Insight & CTA“You feel alone when you go into these things, but when you leave, you come out as family.” - Mandy AbereggStart your journey today. Visit hemob.org to find upcoming events, resources, and the support you’ve been looking for. You are not alone.

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.