We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families. • growing up with a dad with severe hemophilia A • invisible symptoms in teen years and surgery complications • being told “just a carrier” versus getting a real diagnosis • marriage, militar...

Ever wondered how a bruised toddler grows up to be a hematologist changing the game for women with bleeding disorders? Dr. Danielle Nance takes us on that journey full of aha moments, hard truths, and some laugh-through-the-tears stories. We’ll chat about missed diagnoses, why words matter, the battle of factor vs painkillers, what imaging really shows, and how to prep for clinic visits like a pro. Plus: parenting through needles, navigating insurance hoops, and building trust with providers ...

Dr. Mattie Feldman, rheumatologist and healthcare policy expert, exposes how Pharmacy Benefit Managers have evolved from administrative entities into powerful forces that control medication access, often prioritizing profits over patients. • Pharmacy Benefit Managers (PBMs) originally handled prescription coverage but now control what medications doctors can prescribe and patients can access • The "big three" PBMs—CVS Caremark, OptumRx, and Express Scripts—now control 80-85% of all prescript...

This episode focuses on the often-overlooked experiences of women with bleeding disorders. Dr. Akshat Jain discusses the importance of advocacy, the need for gender-sensitive healthcare approaches, and how quality of life relates to treatment accessibility, emphasizing the urgency of creating a supportive environment for patients. • Dr. Jain’s background and expertise in bleeding disorders • Advocacy importance for women with bleeding disorders • Cultural stigmas and challe...

In this podcast episode interview, our host Jonathan James discusses the challenges and critical changes needed to improve the diagnosis and access to treatment for women with bleeding disorders with Dr. Tamuella Singleton. In this conversation, we discuss important questions such as: "What steps are being taken to improve equity and access to healthcare for women and underserved populations?", "What role does genetic testing play in diagnosing and managing bleeding disorders?"...

What if the key to saving countless women's lives is understanding their monthly cycles? Join us for an eye-opening conversation on the Hope Podcast with Dr. Bivin Von Almen, an esteemed obstetrician with over 30 years of experience. From his journey through the medical landscapes of Texas and Louisiana to his impactful work at Charity Hospital, Dr. Von Almen brings invaluable insights into the often misunderstood world of women with bleeding disorders. We unpack the stark reality of these co...

Ivan Giron helped advocate for his daughter Naomi to gain a diagnosis and ongoing treatment after learning more about women having a bleeding disorder. After Ivan realized that his daughter was having abnormal bleeding during her minstrel cycle each month, they started to educate themselves on how the genetic disorder could be passed down to his daughter, and while it looked different for her than it did for him, her need for treatment became more focused after further research. Ivan and Naom...

Claudio Sandoval will share insights on “The Knee: The "Target" Joint” in his session on Sept 26th at 1:00 PM (CST). Join us for our upcoming Joint Health Conference Online on Sept 26th & 27th, sponsored by Octapharma. We are holding this event to discuss how to prevent joint disease and improve long-term outcomes. This free event will be full of great educational sessions where you will hear from experts in Physical Therapy, Ultrasound, Pain Management, Pharmacokinetics, and Mental Hea...

Kevin Griggs will share insights on “Hemarthrosis: Blood Where it Shouldn't Be” in his session on Sept 26th at 10:15 AM (CST). Join us for our upcoming Joint Health Conference Online on Sept 26th & 27th, sponsored by Octapharma. We are holding this event to discuss how to prevent joint disease and improve long-term outcomes. This free event will be full of great educational sessions where you will hear from experts in Physical Therapy, Ultrasound, Pain Management, Pharmacokinetics, and ...

Fernando Reyes will share insights on “Improve Your Mental & Physical Health: Thought, Exercise, and Diet” in his session on Sept 27th at 10:15 AM (CST). Join us for our upcoming Joint Health Conference Online on Sept 26th & 27th, sponsored by Octapharma. We are holding this event to discuss how to prevent joint disease and improve long-term outcomes. This free event will be full of great educational sessions where you will hear from experts in Physical Therapy, Ultrasound, Pain Man...

In this podcast Jonathan James discusses upcoming event plans and patient resources with Joe Ferguson, Tesia Nagorka, and Suzi Cannon. Registration for upcoming events can be found on our website at www.hope-charities.org. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional,...

Rodney Dalrymple shares his journey of living with Hemophilia and overcoming the challenges of treatment with an inhibitor. In this podcast episode we discuss the importance of overcoming the mental challenges associated with growing up with a rare disease, and the vital role of your support systems in community, family and faith. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with gen...

In this episode, Jonathan James interviews Maxwell Hunter who is a quality assurance expert in plasma collection. He shares about current therapies available, technology changes, and product safety. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tang...

In this episode, we talk about the history of the Hemophilia community and the many transitions of treatment and therapy through the last 30 years in the United States. Trish Underland's background as a nurse care coordinator at the Hemophilia & Bleeding Disorders Treatment Center at Johns Hopkins HTC shares her experiences of working with patients to improve outcomes. Trish provides an excellent perspective on the important role that plasma-derived products and PK studies play for people...

When most people are diagnosed with a rare disease like Hemophilia it is common to experience fear of the unknown, but when that diagnosis happens overseas in a foreign country with doctors and nurses who don't speak your language the uncertainty is insurmountable. In this episode, Jonathan James interviews Brittnee Vasil who was living overseas with her husband while deployed in the Navy and experienced the most frightening time of her life. She shares her story and how she overcame such ins...

Your personal information is protected by The Health Insurance Portability and Accountability Act of 1996 (HIPAA). In this podcast, our host Jonathan James does a deep dive with Greg Webb, HIPAA compliance officer and in-house counsel for Hope Charities, on how to protect your personal health information and what things you would consider when you share your information with others. Hope Charities is a national nonprofit focused on helping people living with rare and chronic ill...

“Financial Assistance Legislative Challenges” In Episode 6 Jonathan James and James Romano have an important discussion about many of the legislative challenges facing people who need financial assistance while living with a rare or chronic disease like Hemophilia. James talks about the copayment accumulator, third party payments and many other issues that directly impact the financial assistance people are able to receive when living with a rare disease. James is the executive director for U...

Living with Hemophilia is no easy road and the unsung heroes of anyone living with a rare or chronic condition are the family that surrounds them. Hannah James joins her Dad Jonathan James in an unplugged interview to talk about growing up as a daughter of someone living with hemophilia. In this episode, we cover important issues like a Child's perspective of watching their Dad struggle at times with the limitations of hemophilia and other topics like what it’s like growing up being involved ...

There is no better way to connect with family or friends than to spend time enjoying food with one another. In this episode, Jonathan James and Brad Creel talk with Food Network host and world-renowned author and food expert Simon Majumdar to discuss the important ways that food brings happiness, community, and health to our lives. Support the show

In Episode 3 Jonathan James and Lori Bienvenu, LPC sit down with suicide survivor Emma Benoit to have an important conversation about #MentalHealth and suicide prevention. Emma shares her story of surviving a suicide attempt and her undiagnosed depression and anxiety and the lessons she learned on her journey. Emma shares her story in the documentary “My Ascension” and speaks to students and adults about the important role of mental health and how to be aware of the warning signs. You can lea...