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:

1. Why mental health and substance use support are essential in the bleeding disorders community
2. The tragic story that sparked a national movement for access
3. What BD SUMHAC uncovered through their nationwide HTC survey
4. How stigma and fear create systemic barriers to care
5. What self-advocates, families, and clinicians can do to access treatment
6. Resources and action steps for creating change at every level

Episode 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 Foundation

Meet 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:

1. National HTC Survey on access to care
2. Self-advocacy scripts and resource toolkits from BD SUMHAC
3. Partnerships with HTCs and the National Bleeding Disorders Foundation
4. Honest, early, and regular conversations with care teams

Closing 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:

1. Access Toolkits: https://www.bdsumhac.org/patient-access-toolkit
2. BD SUMHAC: https://www.bdsumhac.org
3. National Bleeding Disorders Foundation: https://www.hemophilia.org
4. Coalition for Hemophilia B: https://www.hemob.org
5. Balancing Life’s Issues: 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:

1. Daily habits that sustain mental and emotional wellbeing
2. Why consistency beats intensity when it comes to self-care
3. How to identify early signs of burnout or emotional fatigue
4. Why asking for help is an act of strength, not weakness
5. Ways to build accountability and connection in your daily life

Episode Highlights:

1. The phone battery analogy—why maintenance matters
2. Building daily habits: rest, movement, balance, and boundaries
3. The courage to say “I need help”
4. Finding an accountability partner or trusted ally
5. A one-habit challenge: start small and stay consistent
6. 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 Guest

Latisha 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:

1. The Coalition for Hemophilia B: https://www.hemob.org/
2. Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/
3. Subscribe to Boundless B on Apple Podcasts: https://pod.link/1765188875
4. WHO 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:

1. The difference between “How are you?” and really asking how someone is
2. How small acts of care build psychological safety
3. The role of curiosity and non-judgmental listening in bridging differences
4. Simple ways to show appreciation and reinforce trust
5. How genuine empathy fosters resilience and belonging

Episode Highlights:

1. A moment of real connection—what changes when we pause to listen
2. How to check in without pressure or performance
3. Everyday ways to make others feel seen and valued
4. The power of curiosity in breaking assumptions
5. A challenge for the day: check in with one person—authentically
6. 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 Guest

Latisha 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:

1. The Coalition for Hemophilia B: https://www.hemob.org/
2. Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/
3. Subscribe to Boundless B on Apple Podcasts: https://pod.link/1765188875
4. WHO 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:

1. Why self-connection is the foundation of emotional well-being
2. How “pausing with purpose” resets your nervous system
3. Practical micro-moments that build calm and clarity
4. How self-awareness strengthens empathy toward others
5. The science behind presence, compassion, and the simple act of breathing

Episode Highlights:

1. The oxygen mask metaphor and why self-care matters
2. Pause with purpose—small daily resets that ground you
3. Asking yourself the real questions: “How am I feeling?”
4. How self-awareness builds empathy and compassion
5. Guided deep breathing for nervous system regulation
6. 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 Guest

Latisha 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:

1. The Coalition for Hemophilia B: https://www.hemob.org/
2. Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/
3. Subscribe to Boundless B on Apple Podcasts: https://pod.link/1765188875
4. WHO 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 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 You’ll Learn

• Why global inequities in hemophilia treatment persist—and what’s being done
• How Save One Life began, and the vision behind “one child at a time”
• What $35 a month can do for a family living without access to medication
• The impact of scholarships, enterprise grants, and mentorship for long-term change
• How giving empowers the giver—creating a “win-win” mental health boost
• The power of story, advocacy, and how you can use your voice

Episode Highlights

• 00:00 – Welcome and guest introductions
• 01:19 – The origin story of Save One Life and founder Laurie Kelley
• 03:20 – How Save One Life has helped over 2,500 individuals across 18 countries
• 04:51 – Cindy shares her personal connection: her son’s diagnosis and hope
• 05:59 – Debbie on being moved to act after seeing untreated children
• 06:37 – How the Ambassador Program is spreading awareness and action
• 07:55 – $35 a month: what sponsorship really provides
• 08:49 – Why Save One Life’s direct model is so powerful
• 09:21 – The meaning behind the name “Save One Life”
• 10:05 – Story: How a young man in India got his degree and gives back
• 11:01 – Story: Project SHARE saves a boy’s life after a brain bleed
• 11:55 – Story: A single mom’s transformation through business support
• 13:19 – Emotional ripple effect: how confidence and dignity change lives
• 14:40 – Debbie on advocacy as a win-win for giver and receiver
• 15:53 – Cindy reflects on a mother in Nigeria who sparked her commitment
• 17:18 – What’s next: expanding the Ambassador Program and turning 25
• 18:43 – Ways to get involved, from donations to committees
• 19:34 – A message of hope, humanity, and shared responsibility

Meet the Guests

Cindy Komar is the Executive Director of Save One Life and the mother of a son with severe Hemophilia A. With over two decades of personal and professional involvement in the bleeding disorders community, she now leads global initiatives that bring life-changing support to those in need.

Debbie de la Riva is a longtime sponsor and now Ambassador Program Coordinator for Save One Life. As a parent of a son with hemophilia, she brings passion and perspective to her mission of training advocates and building bridges between U.S.-based sponsors and families worldwide.

Tools, Frameworks, or Strategies Mentioned

• Sponsorship Program – $35/month direct support for a specific child or family
• Scholarships & Grants – Support for education and small business development
• Project SHARE – Humanitarian aid program providing donated medication
• Ambassador Program – Advocacy and storytelling outreach initiative
• One-to-One Impact Model – Donors choose a specific child and see their journey
• Committees – Volunteer opportunities for grant and scholarship review

Closing Insight & CTA

“Save One Life gives us a chance to be good humans. To see someone’s pain—and do something about it.”

— Debbie de la Riva

No act of compassion is too small. Whether you're sponsoring a child, sharing a story, or joining a committee, you are changing lives—and helping people rise.

Visit saveonelife.net to get involved.

Resource Links

• Save One Life: https://saveonelife.net
• The Coalition for Hemophilia B: https://www.hemob.org/
• Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/
• Subscribe to Boundless B on Apple Podcasts: https://pod.link/1765188875
• Subscribe to BLI’s YouTube Channel: https://www.youtube.com/@balancinglifesissuesinc.8501?sub_confirmation=1

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 change

Episode 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 disorders

Meet 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 tools

Closing Insight & CTA:

Resource & Links:

• Danny’s Dose Website: https://www.dannysdose.org/
• 
  
• Emergency Preparedness Checklist: https://www.dannysdose.org/emergency-preparedness
• 
  
• The Coalition for Hemophilia B: https://www.hemob.org/
• 
  
• Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/
• 
  
• Boundless B Podcast Page: https://pod.link/1765188875

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.

What You’ll Learn:

1. Why awe is a “superfood emotion” that reduces stress and fosters resilience
2. How to recognize awe in everyday life—even in the middle of chaos
3. What research says about the link between awe, curiosity, and learning
4. The role of storytelling and emotional vocabulary in child development
5. How community and collective moments create “belonging-based awe”
6. Why presence—not perfection—is the foundation of effective parenting

Episode Highlights:

1. [00:00] Welcome + Deborah’s background as educator and writer
2. [02:37] Why there’s no one-size-fits-all parenting strategy
3. [03:56] What makes a child resilient, according to Harvard research
4. [05:47] What is awe—and why don’t we talk about it more?
5. [08:33] Awe vs. gratitude: why one is instinctive and the other cognitive
6. [10:36] How awe sparks curiosity and boosts memory
7. [12:57] Using awe and music as emotional tools during hard times
8. [16:11] Collective awe, kindness, and the power of community
9. [18:28] Awe doesn’t require travel—just radical curiosity
10. [19:45] Why Deborah has hope for the future: “The kids are all right.”

Meet the Guest:

Deborah Farmer Kris is a parenting columnist, educator, speaker, and the author of Raising Awe-Seekers. Her work has been featured by PBS Kids, The Washington Post, and CNN, where she translates complex child development science into clear, compassionate wisdom. She is also the founder of Parenthood365, a platform dedicated to helping families thrive through emotional intelligence, connection, and wonder.

6. Tools, Frameworks, or Strategies Mentioned

1. The “Superfood Emotion” model of awe
2. Research from the Center on the Developing Child at Harvard
3. Radical Curiosity as a parenting lens
4. Collective Effervescence (community-based awe)
5. Emotional vocabulary-building for kids

Closing Insight & CTA:

“Awe doesn’t make everything better. But it reminds us that life is bigger than the stress we’re carrying. It’s not about ignoring the hard—it’s about holding the beauty alongside it.”

Feeling inspired? Listen now and explore how you can bring more awe into your life—one curious moment at a time.

Resource & Links:

1. Deborah on LinkedIn: https://www.linkedin.com/in/deborahkris/
2. Raising Awe Seekers Book: https://www.teachercreatedmaterials.com/products/raising-awe-seekers-how-the-science-of-wonder-helps-our-kids-thrive-153673
3. Parenthood365 Website: https://www.parenthood365.com/
4. Deborah on PBS Parents: https://www.pbs.org/parents/authors/deborah-farmer-kris
5. Washington Post Article on Awe: https://www.washingtonpost.com/lifestyle/on-parenting/children-awe-emotion/2021/11/29/0f78a4b0-4c8e-11ec-b0b0-766bbbe79347_story.html
6. CNN Feature: https://www.cnn.com/2025/05/27/health/teens-awe-deborah-farmer-kris-wellness
7. The Coalition for Hemophilia B: https://www.hemob.org/
8. Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/
9. Boundless B Podcast Page: https://pod.link/1765188875

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
• Balancing Life's Issues

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.

Additional Resources:

1. alignco || Alison Betty
2. Call your Rep, U.S. Capitol Switchboard: 202-224-3121
3. https://www.protectcoverage.org/members
4. The Coalition for Hemophilia B
5. Balancing Life's Issues

Key Takeaways:

1. Advocacy is about using your voice—for yourself and others.
2. Everyone’s story matters, even if it’s not dramatic.
3. Misinformation in healthcare creates confusion; seek out multiple sources.
4. Policy changes often happen in small, impactful steps.
5. Personal stories create emotional connections that influence decision-makers.
6. Effective advocacy is a dialogue, not a monologue.
7. Staying informed on Medicare and Medicaid changes is critical.
8. 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.