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Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
27 Episodes
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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, 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...
In episode two of the Hope Charities Podcast, Jonathan and Stephen sit down and talk about many of the aspects of living with a bleeding disorder from the perspective of the patient. In addition they talk about what that looks like on preventative treatment. You really don't want to miss out on this episode of our podcast so we hope you tune in, take notes and remember, as they say, " You are not alone." Support the show
In episode one of the Hope Charities podcast, Jonathan James (CEO) invites Lesley Lamarie to discuss some aspects of prophylaxis and life for the hemophilia and bleeding disorder community. Make sure to tune in and don't forget to register for Prophy Conference March 10-12, 2022. Registration is still open so don't miss out! Support the show
For 26 years, Nandini Pethe was misdiagnosed before learning she was living with moderate hemophilia. In this episode, she shares her journey from unexplained bruising in India to discovering factor VIII levels around 3%—and how the right diagnosis, the right team, and the right data changed her life. We discuss: • Early Symptoms and Misdiagnosis as von Willebrand Disease • A Locked Knee at 26 and First Effective Factor Infusions • Severe Joint Damage and Learning Bleed Pain vs. Arthritis P...
We explore how to become a self-learner in hemophilia, from adherence and refills to evaluating factor, non-factor, and gene therapies. Jorge shares candid lessons on transition to adulthood, community support, and choosing treatments that fit real life. • Why ownership of care decisions matters • Adherence as daily practice and mindset • Planning refills and emergency doses with pharmacy • Signals it may be time to review medication • Comparing standard, extended, non-factor and gene therap...
We explore how HR1, a prolonged shutdown, and agency reshuffles affect access, affordability, and safety for people with rare and chronic conditions. With Dane Christensen and Jim Romano, we translate the DC process into patient wins and outline how your story drives change. • HR1’s budget mechanics and phase-in effects on healthcare • Medicaid redeterminations and benefit generosity pressures • Blood safety funding is maintained, but the advisory body is dormant • Shutdown delays to biparti...
Jonathan James sits down with Dr. Akshat Jain to address the community’s questions following news of a serious adverse event in an extended trial of a new therapy, Marstacimab. They discuss Pfizer’s transparency, the careful investigative process ahead, and how patients can approach this information through open dialogue with their physicians. Dr. Jain provides an important clinical perspective and emphasizes shared decision-making when exploring treatment options. Hope Charities is a nationa...
A candid conversation with Connie Montgomery charts a lifetime of being dismissed, the car accident that unlocked a Factor VII diagnosis, and the fight to secure prophylaxis. We spotlight bias, culture, and the power of narrative medicine to change outcomes for women with bleeding disorders. • Growing up with unexplained bruising and nosebleeds • Gullah Geechee cultural privacy and silence • Repeated dismissal by clinicians and loss of trust • Heavy menstrual bleeding through two pregnancies...
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...
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