Beyond the Bleeds

Today on Beyond the Bleeds, Heather and guest co-host Erica are joined by Angela Blue, Director of Member & Community Relations with the Hemophilia Alliance, for a conversation about the important work happening behind the scenes to support Hemophilia Treatment Centers (HTCs) and the patients they serve. Angela shares the history and mission of the Hemophilia Alliance and explains how the organization works with HTCs across the country. From group purchasing and 340B pharmacy programs to legal consultation, payer relations, advocacy, and continuing education, the Alliance provides resources that help HTCs remain strong, sustainable, and focused on comprehensive patient care. The conversation also explores challenges facing HTCs today, including insurance barriers, access to specialty medications, and shortages of healthcare providers specializing in bleeding disorders. Angela shares how the Alliance is helping address these challenges while also supporting initiatives such as genetic testing, educating insurers, and advocating for the national HTC network in Washington, D.C. Finally, Angela looks toward the future and discusses how the Hemophilia Alliance is preparing HTCs for emerging therapies, changing insurance trends, and an evolving healthcare landscape. By listening to the needs of HTCs and bringing centers together to share knowledge and resources, the Alliance continues working to strengthen the comprehensive care patients and families rely on. “We focus on the business of running an HTC to make sure that HTCs are sustainable and accessible to patients for the future.” — Angela Blue This episode of Beyond the Bleeds explores: The history and mission of the Hemophilia Alliance How the Alliance supports HTCs and comprehensive patient care Insurance, payer, and access challenges facing the bleeding disorders community Advocacy, education, genetic testing, and other Alliance initiatives Preparing HTCs for emerging therapies and the future of bleeding disorder care Learn More About the Hemophilia Alliance The Hemophilia Alliance works behind the scenes to support Hemophilia Treatment Centers and strengthen care for the bleeding disorders community. To learn more about their mission, programs, advocacy efforts, and the work they are doing across the country, visit www.hemoalliance.org. Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage. Apple | Spotify | iHeart | Amazon Music | Pandora | Deezer | YouTube The post Building Stronger HTCs for Better Patient Care with Angela Blue appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather is joined by guest co-host Erica and HOC Nurse Coordinator Tricia Delaney for a timely conversation about preparing for college with a bleeding disorder. Using HOC’s College Prep Checklist as a guide, Tricia shares practical advice to help students confidently transition to campus life while staying on top of their health and treatment. The discussion covers everything from establishing infusion routines and ordering factor independently to connecting with campus health services, disability offices, and your Hemophilia Treatment Center. Tricia also explains why planning ahead, communicating with roommates and resident advisors, and creating an individualized health plan can make a significant difference if an emergency arises. Heather, Erica, and Tricia also talk about the importance of building independence before arriving on campus. From learning to manage medications and supplies to knowing where to seek care away from home, they offer practical tips that help students feel prepared while giving caregivers greater peace of mind. Whether you’re heading off to college for the first time, supporting a student through the transition, or simply looking for ways to build confidence and independence, this episode provides practical guidance to help make college a successful experience. “You would rather have a plan and not need it than need a plan and not have it.” — Tricia Delaney This episode of Beyond the Bleeds explores: Preparing for college with a bleeding disorder Building independence and managing your own healthcare Creating an emergency plan before arriving on campus Working with your HTC, campus health center, and disability office Tips for staying organized with medications, factor, and medical supplies Support & Resources Planning ahead can help make the transition to college safer and less stressful. Explore these resources mentioned in the episode. 📋 HOC College Prep Checklisthttps://hemophiliaoutreach.org/college-prep-checklist/ 🏥 CDC Hemophilia Treatment Center DirectoryFind a Hemophilia Treatment Center near your college or anywhere in the United States:https://www.cdc.gov/hemophilia/treatment/treatment-centers.html Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage. Apple | Spotify | iHeart | Amazon Music | Pandora | Deezer | YouTube The post The College Checklist for Students with Bleeding Disorders with Tricia Delaney appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by HOC’s Behavioral Health Specialist, Robin Lambrecht, for an important conversation about the connection between mental health and bleeding disorders. Robin shares how behavioral health extends far beyond a mental health diagnosis, offering support for stress, anxiety, emotional well-being, caregiver burnout, and the everyday challenges that can accompany living with a chronic condition. The discussion explores how bleeding disorders can affect emotional health at every stage of life, from childhood through adulthood. Robin explains how chronic pain, frequent treatments, uncertainty, and social isolation can impact both patients and caregivers, while also highlighting the importance of strong support systems and meaningful community connections. The conversation also addresses the stigma surrounding mental health and why asking for help is a sign of strength, not weakness. Robin offers practical guidance on recognizing when additional support may be needed, what to expect from counseling, and simple strategies families can use to encourage open conversations about emotions and mental wellness. Whether you’re living with a bleeding disorder, caring for a loved one, or simply looking for ways to better support your mental health, this episode offers practical advice and reassurance that no one has to navigate these challenges alone. “It’s okay to not be okay. Asking for help is not a failure. I think it’s a sign of courage.” — Robin Lambrecht This episode of Beyond the Bleeds explores: The connection between mental health and bleeding disorders Recognizing stress, anxiety, and caregiver burnout Building healthy support systems and community connections What to expect when seeking behavioral health support Practical strategies for supporting emotional well-being Support & Resources Looking for additional support? Explore HOC’s Behavioral Health Services, learn about upcoming HOC events and programs, connect with your local Hemophilia Treatment Center, or contact the 988 Suicide & Crisis Lifeline by calling or texting 988 if you or someone you know is experiencing a mental health crisis. Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage. Apple | Spotify | iHeart | Amazon Music | Pandora | Deezer | YouTube The post It’s Okay to Not Be Okay: Mental Health and Bleeding Disorders with Robin Lambrecht appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by HOC’s IT Coordinator, Chris Woller, for a personal conversation about growing up with severe hemophilia B and how treatment has changed over the course of his lifetime. Chris shares his experiences navigating childhood with a bleeding disorder, the challenges of early treatment, and how advances in care have allowed him to live a full and active life. The conversation begins with Chris’s childhood, when treatment options were limited and spontaneous bleeds often meant long plasma infusions, wheelchairs, and missing out on activities many other children took for granted. He reflects on the emotional impact of growing up with hemophilia, finding confidence through music, and learning to navigate friendships while living with a chronic condition. Chris also shares the story of a life-threatening brain bleed that changed his perspective and ultimately strengthened his connection to the Hemophilia Outreach Center. He discusses how receiving care through a Hemophilia Treatment Center helped guide his treatment and why comprehensive care continues to play such an important role for people living with bleeding disorders. Finally, the group reflects on how dramatically hemophilia treatment has evolved. From fresh frozen plasma and on-demand treatment to prophylaxis and today’s extended half-life therapies, Chris offers a unique perspective as someone who has experienced these advancements firsthand. He closes with encouragement for parents and young people living with bleeding disorders, reminding listeners that while hemophilia is part of who you are, it doesn’t have to define your future. “Your bleeding disorder is a part of who you are… but it doesn’t have to determine who you are.” — Chris Woller This episode of Beyond the Bleeds explores: Growing up with severe hemophilia B Early treatment with fresh frozen plasma and on-demand therapy Surviving a life-threatening brain bleed How hemophilia treatment has evolved over time Advice for parents and individuals living with bleeding disorders Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage. Apple | Spotify | iHeart | Amazon Music | Pandora | Deezer | YouTube The post Living Life Beyond Hemophilia B: A Personal Journey with Chris Woller appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by Dr. Ken Friedman from Versiti Blood Center and HOC for a conversation about the evolution of hemophilia treatment. Drawing on decades of experience in hematology and bleeding disorders care, Dr. Friedman shares how treatment has changed over time and what those advances have meant for patients and families. The discussion begins with the earliest approaches to hemophilia care, when treatment options were extremely limited. Patients often relied on rest, immobilization, blood transfusions, and supportive care while hoping bleeds would resolve on their own. Dr. Friedman explains how the development of cryoprecipitate, plasma-derived factor concentrates, and home infusions dramatically changed what was possible for people living with bleeding disorders. The conversation also examines the challenges the bleeding disorders community faced during the HIV and hepatitis crisis of the 1980s. Dr. Friedman discusses the transition to recombinant factor products, the rise of prophylactic treatment, and how these advances helped reduce bleeding complications. As treatments improved, patients were able to live more active lives and spend less time managing bleeds. Finally, the group looks toward the future of hemophilia care. From gene therapy to non-factor and rebalancing therapies, Dr. Friedman explains how emerging treatments continue to reshape care for people living with bleeding disorders. The episode highlights how far treatment has come and the progress that continues to improve the lives of patients and families. “The initial care of hemophilia was mostly watch and wait and hope that you get better.” — Dr. Ken Friedman This episode of Beyond the Bleeds explores: Early approaches to treating hemophilia and bleeding episodes The development of cryoprecipitate and factor replacement therapies How prophylaxis changed outcomes for patients with hemophilia The impact of recombinant products and improved blood safety Gene therapy and emerging treatment options for the future Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage. Apple | Spotify | iHeart | Amazon Music | Pandora | Deezer | YouTube The post The Evolution of Hemophilia Treatment with Dr. Ken Friedman appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and guest co-host Erica are joined by Andrea Buxton, HOC&#8217;s Clinical Director and Nurse Practitioner, and Jill Larson, HOC&#8217;s nutritionist, for a conversation about lifestyle medicine. Together, they discuss how small, sustainable changes can improve overall health and well-being. The discussion explores the six pillars of lifestyle medicine: nutrition, physical activity, restorative sleep, social connection, stress management, and avoiding harmful substances. Andrea and Jill explain how these pillars support overall health. They also discuss why they are important for people living with chronic conditions, including bleeding disorders. Throughout the episode, they share practical ways patients and families can make healthier choices without feeling overwhelmed. Topics include eating more fruits and vegetables, reducing ultra-processed foods, improving sleep habits, increasing movement, and strengthening social connections. The group also highlights how HOC&#8217;s comprehensive care model supports lifestyle medicine. Patients have access to nutrition services, physical therapy, behavioral health support, and medical care. Together, these resources help promote long-term health and wellness. The conversation emphasizes that meaningful health improvements do not require drastic changes. Small, achievable goals often lead to lasting success. Taking a short walk, adding an extra serving of vegetables, limiting screen time, or spending more time with others can all make a difference. Over time, those small changes can have a meaningful impact. “You don&#8217;t need to conquer all six pillars. If you have something that&#8217;s small and realistic, that&#8217;s generally more successful.” — Andrea Buxton This episode of Beyond the Bleeds explores: The six pillars of lifestyle medicine How lifestyle medicine supports people with bleeding disorders Practical nutrition and healthy eating strategies The importance of sleep, movement, and social connection Setting realistic goals that support long-term success <iframe width="600" height="338" src="https://www.youtube.com/embed/rI35oBrezlg?si=jidPqPv4r2NBIKlC" frameborder="0" allowfullscreen> Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage. Apple | Spotify | iHeart | Amazon Music | Pandora | Deezer | YouTube The post Small Changes, Big Impact Through Lifestyle Medicine with Andrea Buxton and Jill Larson appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by Dr. Bryan Schwebke from Paramount Physical Therapy. Together, they discuss the philosophy behind Paramount, the importance of movement and long-term wellness, and how HOC’s partnership with Paramount is helping patients approach physical therapy in a new way. Dr. Schwebke shares the story behind Paramount’s founding and explains how his team works to move beyond a traditional “reactive” model of care. Rather than focusing only on injury recovery, Paramount emphasizes long-term movement, education, prevention, and helping patients build confidence in their everyday lives. The conversation also explores how HOC’s comprehensive care model supports this approach. Patients can connect with physical therapy, behavioral health, nutrition, and other resources all in one place. In addition, Heather, John, and Dr. Schwebke discuss the impact movement can have on physical health, confidence, mental health, and overall quality of life. Throughout the episode, the group highlights the importance of meeting patients where they are and helping them build sustainable habits over time. They also discuss breaking down barriers to care and helping patients feel empowered to move better and live fuller lives. “We’re not a physical therapy brand. We’re not a personal training brand. We just happen to use those tools to help people move better and live better lives.” — Dr. Bryan Schwebke This episode of Beyond the Bleeds explores: HOC’s partnership with Paramount Physical Therapy How physical therapy can support long-term wellness The connection between physical and mental health Breaking down barriers to care and improving access Helping patients build confidence and independence through movement <iframe width="600" height="338" src="https://www.youtube.com/embed/sQrzNoHc3tU?si=Yfdu3o0M-cbh0zcI" frameborder="0" allowfullscreen> Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage. Apple | Spotify | iHeart | Amazon Music | Pandora | Deezer | YouTube The post Movement, Wellness, and the Paramount Partnership with Dr. Bryan Schwebke appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John are joined by HOC nurse coordinator Kristin Petrie for a practical conversation about nosebleeds and bleeding disorders. Together, they discuss why nosebleeds happen, how to manage them at home, and when it’s time to seek additional medical support. Kristin explains why nosebleeds are especially common in patients with bleeding disorders like von Willebrand disease and HHT. She also walks through the first steps patients and families should take when a nosebleed starts. The conversation covers prevention strategies, treatment options, and environmental factors that can make nosebleeds worse. Heather, John, and Kristin also discuss when patients should contact their HTC or seek emergency care. The episode highlights practical tools and treatment options that may help manage recurring nosebleeds, including humidifiers, saline sprays, antifibrinolytics, DDAVP, and ENT referrals. The group also shares prevention tips for dry weather, seasonal changes, and other environmental triggers. This episode is filled with practical reminders designed to help patients and families feel more prepared and confident when managing nosebleeds at home. “Our main goal is to educate because the more patients know about nosebleeds, the more prepared they are when one actually happens.” — Kristin Petrie This episode of Beyond the Bleeds explores: Why nosebleeds are common in bleeding disorders The first steps to managing a nosebleed at home When to call your HTC or seek medical attention Prevention tips for dry weather and seasonal changes Resources and support available for patients and families <iframe width="600" height="338" src="https://www.youtube.com/embed/cWneA6FGPpQ?si=5UAOM7sNGud2Z4k2" frameborder="0" allowfullscreen> Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage. Apple | Spotify | iHeart | Amazon Music | Pandora | Deezer | YouTube The post Navigating Nosebleeds and Knowing When to Seek Help with Kristin Petrie appeared first on Hemophilia Outreach Center.

In this special episode of Beyond the Bleeds, Heather and John take bleeding disorder awareness beyond the clinic and into the community. From downtown Green Bay to St. Norbert College in De Pere, Wisconsin, they hit the streets to ask everyday people what they know about hemophilia and other bleeding disorders—and the answers might surprise you. With March recognized as Bleeding Disorder Awareness Month and World Hemophilia Day approaching on April 17, this episode brings real conversations to the forefront. From common misconceptions to thoughtful responses and a few laughs along the way, it highlights both the gaps in awareness and the importance of continued education. While bleeding disorders impact thousands of individuals and families, there’s still work to be done in helping others truly understand what that means. Episodes like this show how simple conversations can make a big impact. Watch or listen to the full episode to hear real responses, learn more about bleeding disorders, and see how awareness starts with everyday conversations. <iframe width="600" height="338" src="https://www.youtube.com/embed/XC9WCz8Z5b8?si=OjRpj80qGpP5kCRj" frameborder="0" allowfullscreen> Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder? Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we share real stories and helpful conversations to support families at every stage. Apple | Spotify | iHeart | Amazon Music | Pandora | Deezer | YouTube The post Out On The Town: Bleeding Disorders Awareness Edition appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, we’re joined by Andrea Buxton, nurse practitioner, and Brightyn Handrich, physical therapist, to discuss hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndrome (EDS) and how these […] The post Everyday Challenges of Living with HSD and EDS with Andrea Buxton and Brightyn Handrich appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, we’re again joined by Kathleen Gerus-Darbison, sociology professor and founder of the Stitches Doll Project, as John and Heather continue their conversation about the impact […] The post Healing and Advocacy Through the Stitches Doll Project, Part 2 with Kathleen Gerus-Darbison appeared first on Hemophilia Outreach Center.

In this episode of Beyond the Bleeds, John and Heather talk with Kathleen Gerus-Darbison, a sociology professor and founder of the Stitches Doll Project, about love, loss, advocacy, and the […] The post Healing and Advocacy Through the Stitches Doll Project, Part 1 with Kathleen Gerus-Darbison appeared first on Hemophilia Outreach Center.

In Part 2 of this Beyond the Bleeds series, John and Heather continue their conversation with Matthew Barkdull, Clinical Supervisor at The Center for Change, exploring how hemophilia treatment, advocacy, […] The post Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part 2 appeared first on Hemophilia Outreach Center.

In this episode of Beyond the Bleeds, John and Heather talk with Matthew Barkdull, a Clinical Supervisor at The Center for Change, about the history of hemophilia. Matthew talks about […] The post Understanding Hemophilia Through History and Lived Experience with Matthew Barkdull Part I appeared first on Hemophilia Outreach Center.

In this episode of Beyond the Bleeds, we talk with Donna Varney and her daughter, Maria Bularz, about navigating emotions after a bleeding disorder diagnosis. They share their experiences as […] The post Navigating Emotions After a Hemophilia Diagnosis with Donna Varney and Maria Bularz appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, we sit down with Sumedha Ghate, a genetic counselor at HOC, and Andrea Buxton, HOC’s nurse practitioner and clinical director, to break down some of […] The post Common Misconceptions About Bleeding Disorders with Andrea Buxton and Sumedha Ghate appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, we’re again joined by Andrea Buxton and Kristy Schiffer for part two of this heartfelt exploration of family life with a child facing an inhibitor […] The post Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, we sit down with Andrea Buxton and Kristy Schiffer to explore the world of inhibitors in bleeding disorders. We unravel what inhibitors are, why they […] The post Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I appeared first on Hemophilia Outreach Center.

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 and community for patients and caregivers alike. The post Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap appeared first on Hemophilia Outreach Center.

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 […] The post The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich appeared first on Hemophilia Outreach Center.

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 […] The post From Bleeds to Birdies with Golf Pro Perry Parker appeared first on Hemophilia Outreach Center.

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 overcoming challenges, all while highlighting the profound impact of these supportive relationships. The post The Power of Mentorship in the Bleeding Disorders Community with Xavier Krueger & Kevin Leurquin appeared first on Hemophilia Outreach Center.

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 […] The post Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson appeared first on Hemophilia Outreach Center.

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 […] The post Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray appeared first on Hemophilia Outreach Center.

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 bleeding disorder community. The post Nutritionist Advice for Getting the Most From Vitamins with Jill Larson appeared first on Hemophilia Outreach Center.

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 learning is equipping the next generation of nurses to deliver life-saving care and advocacy for those with bleeding disorders. The post Bridging Nursing Gaps with NWTC and Hemophilia Outreach Collaboration with Dr. Jacqueline Stewart appeared first on Hemophilia Outreach Center.

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 goes beyond the clinical to highlight how support staff, research, care coordination, and community outreach shape a patient’s lifelong journey. The post Bridging Hematology, Oncology, and Hemophilia – Inside the Green Bay Oncology and HOC Partnership with Dr. Ryan & Dr. Groteluschen appeared first on Hemophilia Outreach Center.

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, […] The post The Monthlies Project: Menstrual Health Advocacy with Liz Wollenberg & Alison Fiebig appeared first on Hemophilia Outreach Center.

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. The post Navigating Sleep Challenges from Childhood to Adulthood appeared first on Hemophilia Outreach Center.

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 resources are available when a Child Life Specialist isn't on site. The post Inside the World of Child Life Specialists with Chris Bivins appeared first on Hemophilia Outreach Center.

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 more empowered and ready for emergencies, whether at home or traveling far from their usual care team. The post How to Prepare for Emergency Room Visits with Bleeding Disorders with Andrea Buxton & Renata Seiler appeared first on Hemophilia Outreach Center.

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 that empower our community to fight for their rights. The post BD SUMHAC: Advocating for Fair Mental Health and Substance Use Treatment Part II with Kate Bazinsky & Joe Hoelscher appeared first on Hemophilia Outreach Center.

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 conditions, mental health, and substance use, and the urgent advocacy work happening to dismantle discrimination and secure equal access to care for the bleeding disorders community. The post BD SUMHAC: Advocating for Fair Mental Health and Substance Use Treatment Part I with Kate Bazinsky & Joe Hoelscher appeared first on Hemophilia Outreach Center.

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. The post The Science and People Behind Genetic Counseling in Hemophilia with Sumedha Ghate appeared first on Hemophilia Outreach Center.

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. The post Exploring Hemophilia from Camp Klotty Pine to Advocacy with Great Lakes Hemophilia Foundation appeared first on Hemophilia Outreach Center.

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. The post Hemophilia Journey from Newborn Challenges to Care Coordination with Erin Wegner appeared first on Hemophilia Outreach Center.

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 territory. The post Reflecting on Hemophilia’s Bad Blood Era with Peggy Maier & Audrey Nuskiewicz Part II appeared first on Hemophilia Outreach Center.

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. The post Reflecting on Hemophilia’s Bad Blood Era with Peggy Maier & Audrey Nuskiewicz Part I appeared first on Hemophilia Outreach Center.

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. The post Growth & Community Outreach at Wausau’s Hemophilia Center with Angie Farrar appeared first on Hemophilia Outreach Center.

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 post Healthcare Independence and Transition Challenges with Heather & John appeared first on Hemophilia Outreach Center.

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 […] The post The Impact of Gene Therapy with Dave Novak & Rochelle Ginter appeared first on Hemophilia Outreach Center.

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, […] The post Hemophilia in the Classroom: Insights from Nurses, Parents & Patients appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, we welcome Dr. Bridget Freeman to discuss the essential elements of comprehensive health outcomes. We dive into the multifaceted approaches required to ensure long-lasting health […] The post Exploring Health Literacy and Resilience with Dr. Bridget Freeman appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, John and Heather welcome Andrea Buxton and Erica Brock to explore the critical process of transitioning healthcare for patients with bleeding disorders. Our conversation dives into the stages of transition from pediatric to adult care, community support, and the programs available to ease this process. The discussion emphasizes the challenges patients and their caregivers face and the importance of education in managing chronic conditions. The post Seamless Healthcare Transition for Bleeding Disorders with Andrea Buxton & Erica Brock appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, we sit down with Andrea Buxton, a nurse practitioner at the Hemophilia Outreach Center (HOC), and Nora Schmitt, a community member and patient advocate. We […] The post Beyond Heavy Periods: Exploring Menorrhagia and Bleeding Disorders with Andrea Buxton and Nora Schmitt appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, Heather and John welcome Jill Larson, a nutritionist with the comprehensive care team at the Hemophilia Outreach Center in Green Bay. In this episode, Jill […] The post Beans, Lentils, and Beyond: Essential Nutrition Insights for Hemophilia Patients appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, we welcome the Myrie family—Alyssa, Elias, and Eliot—to discuss their experiences at Camp Klotty Pine. Set in Wisconsin, this unique summer camp caters to children with bleeding disorders. It offers them a safe space to enjoy traditional camp activities like swimming, archery, and fishing while providing essential education on managing their conditions. Alyssa, Elias, and Elliot share their heartwarming stories, from overcoming homesickness to forming lifelong friendships with others with similar bleeding disorders. The post Facing Fears and Finding Friendship at Camp Klotty Pine with Alyssa, Eliot, and Elias Myrie appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, we welcomed Bonnie Des Jardins, a registered dental hygienist in Green Bay, Wisconsin. Bonnie shares her insights on the critical connection between oral and systemic health. She sheds light on the unique challenges and necessary precautions for dental care within the bleeding disorders community The post Dental Hygiene Challenges and Solutions for the Bleeding Disorders Community with Bonnie Des Jardins appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, John and I welcome Peggy Maier, an extraordinary nurse and co-founder of the Hemophilia Outreach Center (HOC) in Green Bay, Wisconsin. We delve into Peggy's inspirational journey, the founding of HOC, and her undying commitment to helping those with bleeding disorders. The post Building the Foundation of Hemophilia Care in Green Bay with Co-Founder Peggy Maier appeared first on Hemophilia Outreach Center.

Today on Beyond the Bleeds, John and Heather welcome Jamison Buxton, CEO of the Hemophilia Outreach Center in Green Bay, Wisconsin, to discuss his journey from a parent of a child with hemophilia to leading an organization dedicated to supporting those with bleeding disorders. The post From Parent to CEO: Jamison Buxton’s Hemophilia Journey and Leadership appeared first on Hemophilia Outreach Center.