Episodes

Today on Beyond the Bleeds, we sit down with Stephanie Paap to delve into the lived experience of attending the National Bleeding Disorder Foundation’s annual conference. Together, we journey through the unique considerations of traveling with a bleeding disorder, and the powerful impact of connection, education, and advocacy at a national gathering. We talk honestly about preparing for travel, managing care for a family with Von Willebrand’s disease, and how conferences like NBDF foster hope an...

Today on Beyond the Bleeds, we sit down with Dr. Brightyn Handrich, DPT, to unravel the essential role of physical therapy in the care of patients with bleeding disorders. We examine how physical therapy fits into the comprehensive model at the Hemophilia Outreach Center in Green Bay, explore strategies for injury prevention across different age groups, and discuss how education and tailored interventions can promote joint health and enhance quality of life in this unique community. Dr. Brighty...

Today on Beyond the Bleeds, Heather and John welcome Perry Parker, professional golfer and passionate advocate for the bleeding disorder community. We dive into Perry’s journey from childhood hemophilia diagnosis to his career as a touring golf professional, discussing how resilience, preparation, and a supportive family helped him overcome adversity. Perry shares lessons learned both on and off the course, insights into managing hemophilia while living an active life, and the evolution of commu...

Today on Beyond the Bleeds, we welcome Xavier Krueger and Kevin Leurquin, two amazing members of the bleeding disorders community in Northeast Wisconsin, for an honest and uplifting conversation about the Hemophilia Outreach Center’s mentorship program. Together, we delve into what it means to connect older teens and adults with younger individuals who are navigating life with hemophilia and other bleeding disorders. We share stories about making lasting friendships, building confidence, and ove...

Today on Beyond the Bleeds, Heather and I welcome Amy Wilson, clinical social worker at the Center for Bleeding and Clotting Disorders at M Health Fairview in Minneapolis, Minnesota. We discuss the prevalence and impact of PTSD in the bleeding disorder community, the unique forms of trauma patients experience, and actionable strategies for providing trauma-informed care. Amy shares insights from her groundbreaking multicenter study, explains how trauma manifests for those with chronic conditions...

Today on Beyond the Bleeds, John and I delve into the “One Big Beautiful Bill,” a landmark legislation signed into law on July 4, 2025, and its far-reaching impact on individuals and families living with bleeding disorders. We break down what this trillion-dollar healthcare bill really means—from increased costs and new eligibility rules to the practical next steps for protecting our access to care. An extraordinary advocate and expert joins us to help navigate the changes ahead. Johanna Gray i...

Today on Beyond the Bleeds, we’re joined by John and our returning guest Jill Larson, as we dig deep into the often-confusing world of vitamins. We explore what vitamins truly are, why they matter for our health, and how they interact in our bodies like instruments in a symphony. We break down the difference between fat-soluble and water-soluble vitamins, examine whether you really need supplements, and share practical tips for getting nutrients from your diet, especially for those of us in the ...

Today on Beyond the Bleeds, we sit down with Dr. Jacqueline Stewart, known to her students as Jackie, an Associate Degree Nursing Instructor at Northeast Wisconsin Technical College (NWTC). Together, we delve into the importance of bleeding disorder education in nursing, NWTC’s innovative approach to bridging classroom theory and real-world patient care, and the powerful partnership between NWTC and the Hemophilia Outreach Center. Our conversation highlights how immersive, patient-centered learn...

Today on Beyond the Bleeds, we dive into the evolving world of hematology and oncology collaboration and care with Dr. Matthew Ryan and Dr. David Groteluschen from Green Bay Oncology. We discuss the vital importance of specialized, comprehensive care for patients with bleeding disorders, the significance of early intervention, and how partnerships between treatment centers and oncology practices are expanding access and improving outcomes, even in some of the most rural regions. Our conversation...

Today on Beyond the Bleeds, we sit down with Liz Wollenberg, Chief Systems and Strategy Officer at Feeding America Eastern Wisconsin, and Alison Fiebig, Vice President of Strategy, Brand Marketing, and Communications at Emplify Health. Together, they are founding members and board members of The Monthlies Project, a grassroots initiative dedicated to ending period poverty for school-aged kids in Northeast Wisconsin and beyond. We peel back the stigma around menstruation, discuss the ripple effec...

Today on Beyond the Bleeds, we’re joined by Dr. Bridget Freeman to explore the importance of sleep health—why it’s foundational to our overall well-being, how our sleep patterns evolve throughout a lifetime, and what we can do to optimize sleep for physical, mental, and emotional health. From the science of circadian rhythms to practical fixes for common sleep problems, we break down actionable steps for creating a better night’s rest and why you might never fully “catch up” on missed sleep. Dr...

Today on Beyond the Bleeds, I’m joined by Chris Bivins, Child Life Specialist, to talk about the essential role Child Life professionals play in pediatric healthcare settings. We explore how Child Life Specialists help children and families navigate the challenges of illness, injury, and hospitalizations—ensuring that kids develop emotionally and socially, even amid medical treatments. We also discuss the powerful tools they utilize, how they collaborate with care teams and families, and what re...

Today on Beyond the Bleeds, we sat down with Andrea Buxton, a nurse practitioner, and Renata Seiler, nurse coordinator, to discuss what happens when patients with bleeding disorders visit the emergency room. Together, we unpacked the unique challenges these patients face, the critical importance of preparedness and advocacy, and the decisive role of coordinated care. This conversation is packed with insights that can help anyone living with a bleeding disorder—or caring for someone who does—feel...

Today on Beyond the Bleeds, we sit down with Kate Bazinsky and Joe Hoelscher for part two of ‘BD SUMHAC Advocating for Fair Mental Health and Substance Use Treatment Part II’ and dive deep into the complexities of advocating for fair mental health and substance use treatment for people with bleeding disorders. Together, we break down the obstacles families face in accessing equitable inpatient or residential care, explore how advocacy shapes state and national policy, and share vital resources t...

Today on Beyond the Bleeds, we’re joined by Kate Bazinsky, chair of the Bleeding Disorder, Substance Use and Mental Health Access Coalition (BD SUMHAC), and Joe Hoelscher, a behavioral health specialist at the Hemophilia Outreach Center in Green Bay. Together, we shine a light on the painful and often unseen barriers faced by people with bleeding disorders when they seek inpatient mental health and substance use treatment. We discuss the origins of BD SUMHAC, the deep connections between chronic...

Today on Beyond the Bleeds, John and Heather welcome Sumedha Ghate, a genetic counselor at HOC in Green Bay, Wisconsin. Sumedha delves into the intricate world of genetic counseling, discussing the nuances of determining hereditary patterns in hemophilia and other bleeding disorders. The conversation helps demystify genetic testing and its role in diagnosing and managing bleeding disorders, aiming to empower individuals with knowledge about their health and family history. Sumedha Ghate has bee...

Today on Beyond the Bleeds, Heather and John welcome Karin Koppen and Kailee Frederick from the Great Lakes Hemophilia Foundation to discuss their incredible work and programs serving the bleeding disorders community. Karin and Kailee share insights into the distinctive roles of local chapters in providing education, support, and advocacy while working closely with hemophilia treatment centers to ensure comprehensive patient care. Karin Koppen joins us as the Director of Camp and Community Outr...

Today, on Beyond the Bleeds, we share the experiences of Erin Wegner, a mother who navigates life with two sons diagnosed with hemophilia. Alongside Angie Farrar, lead nurse coordinator at the Wausau Hemophilia Outreach Center, Erin discusses the challenges and learning curves of her unexpected journey into the world of bleeding disorders, emphasizing the importance of specialized care and community support. Erin Wegner is a mother of two boys, Levi and Everett, both diagnosed with hemophilia. ...

Today on Beyond the Bleeds is part 2 of our “Reflections on Hemophilia’s Bad Blood Era” with Peggy Maier and Audrey Nuskiewicz, foundational Hemophilia Outreach Center (HOC) nurses. We delve into the challenges faced by the hemophilia community during this period, the impact of HIV/AIDS, and the resilience and hope that emerged in the face of adversity. Peggy and Audrey share their experiences as caregivers, advocates, and pillars of support for patients and families navigating uncharted territo...

Today on Beyond the Bleeds, we’re thrilled to have Peggy Maier and Audrey Nuskiewicz sharing their poignant memories and impactful experiences during the Bad Blood Era. This challenging period in the bleeding disorders community saw contaminated blood products spread diseases like HIV and Hepatitis C. Peggy and Audrey delved deeply into their firsthand experiences as nurses, supporting their patients and community with unwavering dedication and care during these tumultuous times. Peggy Maier an...

Welcome to Beyond the Bleeds. Today, we sit down with Angie Farrar, lead nurse coordinator at the Hemophilia Outreach Center’s Wausau location, to discuss the center’s vital role in improving bleeding disorder care in central Wisconsin. We delve into the challenges patients face in rural areas and the significant strides made in education and outreach to better serve individuals with bleeding disorders. Angie Farrar brings over 15 years of nursing experience to her role at the Hemophilia Outrea...

On Beyond the Bleeds, John and Heather take a different approach today by becoming both the host and the guest, diving deep into life transitions in healthcare. Previously, they’ve discussed the Hemophilia Outreach Center’s support systems, but today, they broaden the scope to explore how transitions affect all aspects of life. These multifaceted and universal transitions are covered from childhood to adulthood, navigating work environments, or even preparing for retirement. Heather Hansen and ...

Today on Beyond the Bleeds, we welcome Rochelle Ginter, RN, at the Hemophilia Outreach Center in Green Bay, Wisconsin, and David Novak, who shares his experience receiving gene therapy for hemophilia A. We delve into the mechanics of hemophilia A, the latest advancements in gene therapy, and David’s journey in transforming his treatment approach. The conversation highlights expectations, impacts, and the broader implications of gene therapy in managing hemophilia. Rochelle Ginter is a registere...

Today on Beyond the Bleeds, John and Heather sit down with Kelli Birk and Crosby Willett, alongside Tricia Delaney, a nurse at the Hemophilia Outreach Center in Green Bay, Wisconsin, to discuss the importance of school in services for children with bleeding disorders. The conversation covers what these in-services entail, how they benefit both students and school staff, and personal experiences from Kelly and Crosby on navigating the school system with a bleeding disorder. Tricia Delaney is a n...