Beyond the Bleeds

By Hemophilia Outreach CenterMedicine Health & Fitness

Beyond the Bleeds episodes

August 18, 2025Bridging Nursing Gaps with NWTC and Hemophilia Outreach Collaboration with Dr. Jacqueline Stewart
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.
Dr. Jacqueline Stewart is a seasoned nursing educator with a rich clinical background in pediatric hematology and oncology. For a decade, she’s shaped nursing curriculum at NWTC, fostering partnerships to create forward-thinking, hands-on learning experiences for her students. Her leadership has been instrumental in bringing real-world insight to the classroom, from integrating simulation technology to establishing clinical rotations with critical partners like the Hemophilia Outreach Center.
“When students see this kind of advocacy in action, it helps them imagine their own potential to make a difference, whether that’s for one patient, one policy, or a community.” ~Dr. Jacqueline Stewart
Today on Beyond the Bleeds:
NWTC’s nursing program offers multiple pathways, flexible learning options, and innovative tools like augmented and virtual reality labs for hands-on clinical simulations.
The partnership with the Hemophilia Outreach Center brings nursing students into direct contact with bleeding disorder patients and multi-disciplinary healthcare teams, deepening their understanding of comprehensive care.
Second-year nursing students participate in a course called Clinical Care across the Lifespan, experiencing both hospital-based obstetrics and community clinicals at the HOC.
Real-life patient stories and high-impact practices—like interactive case studies and competitive games—make complex bleeding disorder education memorable and applicable.
Bleeding disorder education is threaded throughout the curriculum, from basic theory to high-fidelity simulations like postpartum hemorrhage.
Students gain practical knowledge of medications, clotting times, and diagnostics, connecting classroom concepts to real-world interventions for both common and rare bleeding conditions.
The partnership has inspired personal health advocacy, with some students seeking care after recognizing their symptoms through the Menarche Clinic presentation.
Dr. Stewart envisions even more immersive experiences ahead, from virtual reality scenarios to expanded clinic rotations where students witness infusions and multi-disciplinary teamwork in action.
Guest Contact Information:
Dr. Jacqueline StewartNortheast Wisconsin Technical College
Resources Mentioned:
Auggie Scholarship for Nursing Students (open to students in select Wisconsin and Michigan counties) University of Wisconsin Green Bay Nursing Program(NWTC/UTWGB 1-2-1-1 partnership)
The post Bridging Nursing Gaps with NWTC and Hemophilia Outreach Collaboration with Dr. Jacqueline Stewart appeared first on Hemophilia Outreach Center.
21 min
August 04, 2025Bridging Hematology, Oncology, and Hemophilia – Inside the Green Bay Oncology and HOC Partnership with Dr. Ryan & Dr. Groteluschen
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.
Dr. Matthew Ryan is the medical director at the Hemophilia Outreach Center and a hematologist-oncologist with Green Bay Oncology. With over 15 years in the field, Dr. Ryan has developed a unique expertise in both oncological and bleeding disorder care, transitioning from his initial background in hematology to become a dedicated leader in adult hemophilia services.Dr. David Groteluschen, also a hematologist-oncologist at Green Bay Oncology, brings 18 years of experience serving diverse communities throughout Wisconsin and Northern Michigan, championing efforts to deliver high-quality, close-to-home care for patients with cancer and blood disorders.
“We just want to bring care closer to home—providing access to patients for unique care and comprehensive care at their location.” ~Dr. David Groteluschen
Today on Beyond the Bleeds:
Comprehensive care at specialized treatment centers like HOC provides benefits that rival or exceed university settings, especially for complex bleeding disorders.
Collaboration between hematology/oncology clinics and hemophilia treatment centers is critical for timely, coordinated, and high-quality patient care.
There is a dramatic difference in the education and exposure to bleeding disorders between general clinical training and hands-on experience in specialty clinics.
Early diagnosis and intervention in children and adults can prevent lifelong complications, especially cumulative joint damage from recurrent bleeds.
New treatments, including gene therapy, are transforming the landscape of hemophilia care; however, the field is still in its early stages regarding long-term data.
Broader outreach and clinical access, including virtual visits, help reach patients in remote areas who may otherwise go undiagnosed or untreated.
Many patients with mild or moderate bleeding disorders, particularly women, are still often underdiagnosed or mistakenly normalize their symptoms due to family history.
Financial counseling, nursing coordination, dietitians, and social workers are essential components of the comprehensive care model, helping patients navigate not just medical care, but also life’s logistics and support.
Guest Contact Information
Green Bay Oncology: https://www.gboncology.comHemophilia Outreach Center: https://hemophiliaoutreach.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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities!
Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15, plus self-infusion support in a fun, understanding environment.
HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it.
Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at [email protected] or 920-965-0606
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.
31 min
July 21, 2025The Monthlies Project: Menstrual Health Advocacy with Liz Wollenberg & Alison Fiebig
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 effects of period poverty on education and well-being, and highlight how community-driven solutions are making a difference.
Liz Wollenberg is a leader in systems strategy at Feeding America Eastern Wisconsin, combining deep expertise in nonprofit collaboration and advocacy for basic needs. Alison Fiebig brings her background in brand strategy and community engagement to Emplify Health and The Monthlies Project. Both Liz and Alison have championed the movement to address menstrual equity by connecting diverse partners – from food banks to women’s funds – and have been pivotal in building the Monthlies Project’s model for sustainable community support.
“We have no staff. It is a community collaboration … people saying, ‘I’m not going to watch this happen in my community any longer.’” ~Alison Fiebig
Today on Beyond the Bleeds:
The Monthlies Project tackles period poverty by providing free menstrual products to schools and organizations serving youth in Northeast Wisconsin.
Period poverty negatively impacts school attendance, mental health, and educational opportunity, especially among those who menstruate.
Stigma and misconceptions persist – many are surprised that period poverty exists locally, or assume it’s only a ‘women’s issue.’
The Monthlies Project partners with local nonprofits, school districts, and community organizations, streamlining product distribution through Feeding America Eastern Wisconsin’s logistics network.
Their model is volunteer-driven, with no paid staff, funded by private donations, community events, and foundation partnerships.
Advocacy is a growing area – systemic change, such as eliminating taxes on period products and requiring free supplies in schools, is necessary for lasting impact.
Success is evident in both the number of products delivered (770,000+) and the stories of students who can remain in school thanks to the availability of accessible supplies.
The “An Event, Period.” annual fundraiser is a unique, light-hearted evening featuring community stories, comedians, and creative ways to drive awareness and support (next planned for Spring 2026).
Guest Contact Information:
The Monthlies Project:Website: https://monthliesproject.com/Facebook: https://www.facebook.com/MonthliesProjectLinkedIn: https://www.linkedin.com/company/themonthliesproject/Instagram: https://www.instagram.com/themonthliesproject/
Resources Mentioned:
Feeding America Eastern Wisconsin:https://feedingamericawi.org
Women’s Fund of the Fox Valley Region:https://www.womensfundfvr.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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life ‘Beyond the Bleeds’.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities!
Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15, plus self-infusion support in a fun, understanding environment.
HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it.
Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at [email protected] or 920-965-0606
The post The Monthlies Project: Menstrual Health Advocacy with Liz Wollenberg & Alison Fiebig appeared first on Hemophilia Outreach Center.
31 min
July 07, 2025Navigating Sleep Challenges from Childhood to Adulthood
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. Bridget Freeman is a dedicated pediatric hematologist with extensive experience helping children and their families navigate complex medical needs. Her passion for whole-person wellness extends beyond the clinic, as she brings insight into how sleep, nutrition, and lifestyle interconnect to foster resilience and healing. She’s committed to translating the latest research into strategies anyone can use to rest, recover, and thrive—especially in communities coping with chronic health challenges.
“Sleep is one of the foundational qualities that we need to optimize health. So, sleep, exercise, healthy nutrition, and healthy relationships is part of the infrastructure of our physiology.” ~ Dr. Bridget FreemanToday on Beyond the Bleeds:
Sleep health is much more than hours in bed—it’s the quality, timing, and consistency of those hours that matter most.
Our circadian rhythm, established as early as three to five years old, is guided by both environmental cues (such as light) and our behaviors.
Lack of quality sleep impairs immune function, decreasing natural killer cell activity and even reducing the effectiveness of vaccines such as the flu shot.
Sleep has a direct impact on memory, emotional regulation, and the expression of genes linked to chronic diseases, including cancer.
Stimulants like caffeine can block sleep signals for up to 12 hours—timing these is crucial for healthy sleep onset.
Naps (especially under 45 minutes) offer notable benefits for cardiovascular health and mental refreshment.
Lifestyle habits—such as diet, screen time, exercise, and even room lighting—play a critical role in how well we fall and stay asleep.
Over-the-counter sleep aids, such as sedatives, may sedate, but they don’t promote restorative sleep. Instead, gentle supports like magnesium and melatonin (at safe dosages), as well as establishing a calming bedtime routine, are healthier options.
Resources Mentioned:
Why We Sleep by Matthew Walker
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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life ‘Beyond the Bleeds’.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities!
Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15—plus self-infusion support in a fun, understanding environment.
HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it.
Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at [email protected] or 920-965-0606
The post Navigating Sleep Challenges from Childhood to Adulthood appeared first on Hemophilia Outreach Center.
37 min
June 23, 2025Inside the World of Child Life Specialists with Chris Bivins
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.
Chris Bivins is a seasoned Child Life Specialist who discovered her passion for working with children and their families in hospitals during her college years. Originally on the path to medical school, Chris was inspired by her work in a hospital playroom to advocate for and support kids’ psychosocial and developmental needs throughout their medical journeys. Her experience spans emergency, ICU, clinics, and community hospitals, guiding families through difficult moments and helping children cope with diagnoses and procedures.
“You want to be truthful. You want to build and maintain their trust… giving them options, giving them some amount of control over the things that they can have control over.” ~Chris Bivins
Today on Beyond the Bleeds:
Child Life Specialists prioritize children’s developmental and psychosocial needs, ensuring medical care doesn’t overshadow emotional growth.
Play is central to how Child Life interacts with kids, making medical experiences less intimidating and more understandable.
Honest, age-appropriate explanations and preparation for procedures can help reduce fear, promote trust, and empower children.
Child Life Specialists support not just patients, but siblings and caregivers, by advocating for safe spaces and clear communication.
Collaboration is key: Child Life professionals work closely with nurses, doctors, social workers, therapists, and teachers to tailor support to each family.
Providing children with choices during medical procedures helps foster their autonomy and comfort.
While Child Life programs are most commonly found in children’s hospitals, resources and referrals can often be accessed through the Association of Child Life Professionals, and some specialists offer private or telehealth services.
The field is growing, with Child Life skills and philosophies being used in adult and geriatric care settings as well as traditional pediatric environments.
Guest Contact Information:
Chris BivinsCenter for Suicide AwarenessCertified Child Life SpecialistsResources Mentioned:
• Association of Child Life Professionals• American Academy of Pediatrics Position Paper on Child Life• Edgewood College Child Life Programs• University of Wisconsin–Stevens Point Child Life Certificate
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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life ‘Beyond the Bleeds’.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities!
Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15—plus self-infusion support in a fun, understanding environment.
HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it.
Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at [email protected] or 920-965-0606
The post Inside the World of Child Life Specialists with Chris Bivins appeared first on Hemophilia Outreach Center.
45 min
June 09, 2025How to Prepare for Emergency Room Visits with Bleeding Disorders with Andrea Buxton & Renata Seiler
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.
Andrea Buxton is a nurse practitioner specializing in caring for individuals with bleeding disorders. With extensive experience in clinical practice and patient education, Andrea is dedicated to bridging the gap between patient needs and the complexities of the healthcare system. She excels at guiding patients through emergencies, ensuring they are prepared, informed, and supported during ER visits and transitions in care.
Renata Seiler is a nurse coordinator with a rich background as an emergency room nurse. She combines her ER expertise with her passion for patient advocacy, making her an invaluable resource for patients managing rare and complex bleeding conditions. Her hands-on approach and commitment to educating patients and healthcare professionals have significantly impacted the quality and coordination of care for the bleeding disorder community.
“It doesn’t matter where you travel to, call us here. It doesn’t matter if it’s the middle of the night, the weekend, you call here first.” – Renata Seiler.
Today on Beyond the Bleeds:
Patients with bleeding disorders often experience delayed or suboptimal care in the ER due to the rarity and lack of specialized staff training.
Emergency staff must recognize the urgency and specific treatment needs for bleeding disorders, even if protocols differ from those for the general population.
Bringing an updated emergency card and having contact info for your treatment center handy can significantly improve ER experiences.
Always bring your factor medication to the ER if you have it, but be aware of hospital policies regarding patient-supplied medication.
Medical ID jewelry can be lifesaving if a patient cannot communicate in an emergency.
Always call your HTC (Hemophilia Treatment Center) before heading to the ER—even while traveling or on vacation—to allow professionals to coordinate care and ensure ER staff are informed and prepared.
Advocacy starts at check-in: let registration and triage nurses know you have a bleeding disorder and require urgent attention.
Preemptive travel planning includes knowing hospital locations along your route, bringing extra clothing, and ensuring you understand where specialized care can be accessed.
Guest Contact Information:
Andrea BuxtonHemophilia Outreach Center (HOC) – Wisconsinhttps://hemophiliaoutreach.org
Renata SeilerHemophilia Outreach Center (HOC) – Wisconsinhttps://hemophiliaoutreach.org
Resources Mentioned:
• Hemophilia Outreach Center (HOC), available 24/7 for patients in need of assistance: https://hemophiliaoutreach.org• Medical emergency cards issued during annual HTC visits• MedicAlert: https://www.medicalert.org• National Hemophilia Foundation treatment center directory for those traveling or relocating: https://www.hemophilia.org/find-treatment-center
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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities!
Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15, plus self-infusion support in a fun, understanding environment.
HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it.
Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at [email protected] or 920-965-0606
The post How to Prepare for Emergency Room Visits with Bleeding Disorders with Andrea Buxton & Renata Seiler appeared first on Hemophilia Outreach Center.
23 min
May 26, 2025BD SUMHAC: Advocating for Fair Mental Health and Substance Use Treatment Part II with Kate Bazinsky & Joe Hoelscher
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.
Kate Bazinsky is a dedicated advocate, mother, and driving force behind BDSUMHAC. With a deep commitment to health equity, she brings personal perspective and professional expertise to the bleeding disorders community. Kate leads collaborative teams at BDC Map, works with national organizations, and builds momentum on the state level to advance inclusive access to care and challenge discrimination in medical settings.
Joe Hoelscher is a seasoned behavioral health specialist with nearly 30 years of experience working across the spectrum of mental health and substance use disorders. Currently at the Hemophilia Outreach Center in Green Bay, Joe brings a deep understanding of the unique intersections between bleeding disorders, chronic pain, and behavioral health. His wide-ranging expertise includes work with both children and adults, and he holds specialized credentials in alcohol and other drug abuse (AODA) treatment. Joe is dedicated to collaborative, holistic care, with a special focus on advocacy for those who often fall through the cracks in our healthcare system.
“It’s essential to recognize that our community deserves the same level of access as anyone else. I see it as a health equity issue.” ~Kate Bazinsky
Today on Beyond the Bleeds:
The National Bleeding Disorder Foundation’s Medical and Scientific Advisory Council affirms that bleeding disorders should not exclude anyone from inpatient or residential mental health or substance use treatment if their condition is well managed.
Discriminatory practices—such as requiring people to forgo factor medications or discharging them when they need to infuse—are actively being challenged through advocacy.
BDC Map’s dedicated teams provide toolkits and resources for providers, families, and individuals facing barriers to treatment and help educate facilities on appropriate accommodations.
National advocacy has led to changes in the American Society for Addiction Medicine’s guidelines, which now specifically protect the rights of people with self-managed bleeding disorders.
Federal efforts, including updates to Section 504, have made it illegal for federally funded facilities to deny access purely based on a bleeding disorder diagnosis.
State-level advocacy is in progress, with BDC Map working actively in multiple states to assess barriers and educate governmental agencies and treatment facilities.
There are ample ways for community members to get involved, from social media ambassadorship to participating in national advocacy events like Washington Days.
Ensuring early intervention and open dialogue about mental health and substance use between patients, families, and treatment providers is critical to preventing crises and overcoming stigma.
Guest Contact Information:
Kate Bazinsky: https://bdsumhac.orgInstagram, Facebook, LinkedIn: find via the BDSUMHAC link tree
Resources Mentioned:
BDSUMHAC website & toolkits: https://bdsumhac.orgNational Bleeding Disorder Foundation: https://www.hemophilia.orgAmerican Society for Addiction Medicine (ASAM): https://www.asam.orgNational Institute on Drug Abuse (NIDA): https://nida.nih.govNational Institute of Mental Health (NIMH): https://nimh.nih.govNational Bleeding Disorder Foundation’s Washington Days: https://www.hemophilia.org/events/washington-daysBDSUMHAC social media and bi-monthly newsletter: Find links at https://bdsumhac.org/contact
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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities!
Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15—plus self-infusion support in a fun, understanding environment.
HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it.
Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at [email protected] or 920-965-0606
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.
27 min
May 12, 2025BD SUMHAC: Advocating for Fair Mental Health and Substance Use Treatment Part I with Kate Bazinsky & Joe Hoelscher
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.
Kate Bazinsky brings a unique blend of lived and professional expertise to her advocacy. As the mother of two children with severe hemophilia and an accomplished health policy consultant with a decade of experience on Capitol Hill, Kate has dedicated her career to driving impactful solutions for multi-stakeholder groups. Passionate about consensus-building and deeply committed to advancing access and equity, Kate now channels her skills and compassion into leading BD SUMHAC’s national and state advocacy work.
Joe Hoelscher is a seasoned behavioral health specialist with nearly 30 years of experience working across the spectrum of mental health and substance use disorders. Currently at the Hemophilia Outreach Center in Green Bay, Joe brings a deep understanding of the unique intersections between bleeding disorders, chronic pain, and behavioral health. His wide-ranging expertise includes work with both children and adults, and he holds specialized credentials in alcohol and other drug abuse (AODA) treatment. Joe is dedicated to collaborative, holistic care, with a special focus on advocacy for those who often fall through the cracks in our healthcare system.
“What we found was that 83% of hemophilia treatment center providers who had attempted to refer their folks with bleeding disorders to inpatient or residential substance use or mental health treatment facilities had received denials.” – Kate Bazinsky
Today on Beyond the Bleeds:
The vast majority of treatment denials for the bleeding disorders community are tied to inpatient settings—outpatient access remains relatively better, though limited for all.
Top reasons for denial include fear of needles/infusions, medical complexity, and insurance or medication cost issues, sometimes even if the patient doesn’t require active medication.
Mental health and substance use disorders are deeply interconnected, and people with bleeding disorders face heightened risk due to chronic pain, anxiety, and opioid prescriptions.
Lack of education among inpatient and residential facilities fuels “front door” discrimination, as many refuse to learn what’s required for safe care.
National surveys and advocacy have led to significant wins, including updated American Society for Addiction Medicine criteria and strengthened federal anti-discrimination rules (Section 504).
Advocacy now occurs at local, state, and national levels, from directly educating facility staff to collaborating with lawmakers and federal agencies.
Families, providers, and advocates can access resources, including toolkits, support networks, and public comment and engagement opportunities.
The bleeding disorders community is encouraged to speak openly about mental health, access treatment early, and rally for policy change, because advocacy and education are for everyone.
Guest Contact Information:
Kate Bazinsky & BD SUMHAC: https://bdsumhac.orgSign up for the newsletter, explore resources, or join advocacy initiatives and the Social Media Ambassador program.
Resources Mentioned:
BD SUMHAC Provider & Access Toolkits: https://bdsumhac.org/resources/
Social Media Ambassadors (sign up via BD SUMHAC site)
National Institute on Drug Abuse (NIDA): https://nida.nih.gov
National Institute of Mental Health (NIMH): https://nimh.nih.gov
National Bleeding Disorders Foundation (NBDF) – Washington Days Advocacy: https://www.hemophilia.org/events/washington-days
Hemophilia Federation of America: https://www.hemophiliafed.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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life ‘Beyond the Bleeds’.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
Know a child or teen in Wisconsin with a bleeding disorder?Don’t miss these life-changing summer opportunities!
Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15, plus self-infusion support in a fun, understanding environment.
HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it.
Learn more about Camp Klotty Pine at glhf.orgJoin the mentorship program by contacting Heather Hansen at [email protected] or 920-965-0606
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.
29 min
April 28, 2025The Science and People Behind Genetic Counseling in Hemophilia with Sumedha Ghate
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 been a genetic counselor at HOC since 2011. Her journey into genetics started with a fascination with the field’s perfect blend of science and personal interaction. Through her expertise, Sumedha has helped numerous families understand the hereditary nature of hemophilia and navigate the complexities of genetic health management.
“Knowing somebody’s carrier status can be very important for their own medical management.” – Sumedha Ghate
Today on Beyond the Bleeds:
Genetic counseling combines science with patient and family care, which is vital for diagnosing hereditary disorders.
Understanding carrier status is crucial for individual medical and future family planning.
Hemophilia is inherited in an X-linked manner, affecting males and females differently.
Hemophilia can be inherited or de novo (spontaneous mutation), impacting future generations.
Acquired hemophilia is not hereditary, often occurring due to other health conditions.
Genetic testing should be done through medically approved laboratories for accurate results.
Misconceptions like genetic conditions skipping generations are debunked through genetic counseling.
Different bleeding disorders require specific diagnostic approaches; there is no one-size-fits-all method.
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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
Ready for a weekend of connection, education, and fun?
Join the Great Lakes Hemophilia Foundation’s Wisconsin Bleeding Disorders Conference from June 6-8 at the Kalahari Resort in Wisconsin Dells!
This event is packed with expert-led sessions covering mental health, aging with bleeding disorders, nutrition, advocacy, and cutting-edge treatments. Plus, there’s something for the whole family—peer-to-peer discussions, youth programs (ages 7-13), and childcare services (ages 4-6).
Registration includes two nights at the Kalahari Resort, meals, and full access to the resort’s incredible waterpark. Don’t miss out—register by May 1!
Visit glhf.org today to secure your spot and find out about available financial assistance.
We can’t wait to see you there!
The post The Science and People Behind Genetic Counseling in Hemophilia with Sumedha Ghate appeared first on Hemophilia Outreach Center.
32 min
April 14, 2025Exploring Hemophilia from Camp Klotty Pine to Advocacy with Great Lakes Hemophilia Foundation
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 Outreach at Great Lakes Hemophilia Foundation, where she has dedicated the past 18 years to supporting individuals with bleeding disorders. With her extensive experience in nonprofits and a personal understanding of life with a chronic disease, Karin is passionate about creating inclusive environments where people can thrive. Kailee Frederick, the Education and Programs Coordinator, has been with the foundation since 2016 and brings her camp leadership background to enhance programs like Camp Klotty Pine. Together, they foster impactful programs, enriching the lives of those in the bleeding disorders community.
“Creating supportive and inclusive environments for people to grow isat the heart of what we do.” ~Karin Koppen
Today on Beyond the Bleeds:
Great Lakes Hemophilia Foundation (GLHF) supports patients across Wisconsin with non-medical services such as education, advocacy, and financial assistance.
Local chapters like GLHF collaborate with hemophilia treatment centers (HTCs) to provide comprehensive care, balancing medical and non-medical needs.
The Wisconsin Bleeding Disorders Conference is an annual event bringing families together for education and connection.
Camp Klotty Pine offers a transformative summer camp experience for kids with bleeding disorders, focusing on empowerment and community.
Advocacy efforts at GLHF help ensure access to care and legislative awareness at both state and national levels.
GLHF provides scholarships and financial assistance programs to support educational and emergency financial needs.
Fundraising events like the Unite Walk and Best Bloody Series are crucial for sustaining programs and fostering community engagement.
Getting involved with GLHF’s programs and advocacy initiatives can lead to powerful community connections and personal growth.
Guest Contact Information:
Great Lakes Hemophilia Foundation:https://www.glhf.org/
Resources Mentioned:
Wisconsin Bleeding Disorders Conference Registration:https://www.glhf.org/events
Unite Walk:https://www.glhf.org/unite-walk
Best Bloody Series:https://www.glhf.org/best-bloody
Advocacy Information:https://www.glhf.org/advocacy
Camp Klotty Pine Details:https://www.glhf.org/camp
Events Calendar:https://glhf.org/events-calendar/
Camp Page:https://glhf.org/what-we-do/camp/
Open house Registration:[email protected]
Great Lakes Hemophilia Foundation
Homepage – Great Lakes Hemophilia Foundation
Great Lakes Hemophilia FoundationCamp – Great Lakes Hemophilia Foundation
Facing Fears and Finding Friendship at Camp Klotty Pine with Alyssa, Eliot, and Elias Myrie
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 bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.
Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer
Join the Celebration!
The Hemophilia Outreach Center invites you to a special Open House event!
When: March 26th, 5:00 – 7:00 PM
Where: Expanded Green Bay Clinic, 2060 Bellevue Street
What’s in store?
                  •   Hear from our CEO at 6:00 PM about our exciting strides forward.
                  •    Tour our new, state-of-the-art facilities.
                  •     Enjoy delicious hors d’oeuvres and a captivating historical slideshow.
This event is open to everyone—we can’t wait to celebrate with you!
Don’t forget to RSVP at hemophiliaoutreach.org to claim your exclusive HOC gift.
Let’s grow together—see you there!
The post Exploring Hemophilia from Camp Klotty Pine to Advocacy with Great Lakes Hemophilia Foundation appeared first on Hemophilia Outreach Center.
35 min

About Beyond the Bleeds

From the publisher's feed

Beyond the Bleeds is your go-to podcast for navigating life with bleeding disorders like hemophilia, von Willebrand disease, and more. Each episode brings expert insights, inspiring personal stories,…

Share Beyond the Bleeds

Sign up to save your podcasts

Beyond the Bleeds

Beyond the Bleeds episodes

About Beyond the Bleeds