Hope Charities

Growing up with severe hemophilia A, Patrick James Lynch was told a different story about what his future might look like. Now, reaching middle age, he reflects on what it means to live in a season of life many in his generation weren’t sure they would see. In this episode of the Hope Podcast, Jonathan James sits down with award-winning filmmaker, patient advocate, and Believe Limited co-founder P...

In this powerful episode, Jonathan James sits down with licensed professional counselor, longtime patient advocate, and Mental Health Matters Too founder Debbie De La Riva to pull back the curtain on the hidden mental health realities of living with a bleeding disorder. Together, they explore the anxiety nobody sees, the trauma carried from childhood medical experiences, the pressure to always app...

You pay for insurance—so why are patients still being denied medication? In this important episode, Jonathan James sits down with healthcare policy advocate Kim Czubaruk to unpack Alternative Funding Programs (AFPs) , how they work, and why more patients are facing treatment delays, denials, and confusion while still paying for coverage. They discuss how some employer-sponsored health plans exclud...

A child with hemophilia should not have to live in constant pain because of where they were born—but for much of the world, that is still reality. In this episode, we sit down with Cindy Komar of Save One Life on World Hemophilia Day to discuss the global treatment gap and what “access to care” really looks like for families choosing between basic needs and life-saving treatment. We discuss: • The...

Alternative funding programs are rapidly spreading across employer health plans—but many patients don’t understand how these programs can affect their access to medication. In this episode, William Sarraille , professor of practice and patient advocate, explains how AFPs work, why they’re expanding, and what they mean for patients who depend on high-cost therapies. Together we explore: • What alte...

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...

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 • Signal...

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 • B...

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 an...

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 • Repea...

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  •...

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...

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...

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  • Adv...

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 population...

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 t...

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...

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...

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...

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...

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 d...

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 li...

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 #hemophili...

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 e...

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...