Hope Charities

Jonathan James
  • 4.8 (5)
  • MEDICINE
  • UPDATED WEEKLY

Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.

  1. OCT 31

    More Than a Carrier: How Unexplained Injuries and Surgery Led Me to a Diagnosis - Amanda Gradzewicz

    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, military life, and finding the right HTC  • parenting a daughter who is a carrier and a son with severe hemophilia  • the role of community events, conferences, and social media  • documenting bruises, bleeds, and periods to advocate for care  • mental health, exercise, and therapy as caregiver essentials  • navigating public life with an invisible disease  • future of treatment, gene therapy, and a hopeful outlook If you haven't already, make sure that you like and subscribe to our channel so that we can continue to provide more educational content just like this! Special Thanks to Genentech for sponsoring this episode. Support the show

    58 min

  2. OCT 4

    Women with Bleeding Disorders: Resilience, Hope, and Advocacy with Dr. Danielle Nance

    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 (without losing your mind). 🎧 Hit play, share with a friend, and don’t forget to follow! Every listen helps us get these conversations to more people who need them. Special thanks to Genentech for sponsoring this episode of the Hope Unmuted Podcast! Support the show

    2h 19m

  3. APR 7

    Healthcare in Crisis: The Truth About PBMs with Dr. Madelaine Feldman

    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 prescriptions in the United States • PBMs often prefer higher-priced medications because they generate larger rebates, contributing to rising drug costs • Vertical integration has created conflicts of interest where the same companies own insurance plans, PBMs, specialty pharmacies, and sometimes even drug manufacturing • Utilization management tools like step therapy and prior authorizations have become barriers between doctors and patients • PBMs force patients to use mail-order specialty pharmacies that often provide inferior care compared to community specialty pharmacies • Legislators are working on bipartisan bills like "People Before Monopolies" that would require PBMs to divest from pharmacy ownership • Patient stories and advocacy are crucial for creating meaningful change in the healthcare system Share your pharmacy access or medication challenges with us by emailing info@hope-charities.org to help drive policy change. Support the show

    1h 9m

  4. 12/30/2024

    Women with Bleeding Disorders: Empathy and Innovation in Patient Care

    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 challenges women face in seeking care  • Quality of life concerns in the context of bleeding disorders  • The role of mental health support in comprehensive care  • Managing pregnancy risks in women with bleeding disorders  • The necessity of community advocacy and proactive outreach Support the show

    1h 14m

  5. 12/03/2024

    Empowering Women: Dr. Tamuella Singleton on Bleeding Disorders and Healthcare Equity

    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?" "How can patients and healthcare providers better advocate for comprehensive care and education?" "What are your hopes for future research and legislative changes impacting people with rare bleeding disorders?" #hemophilia  #bleedingdisorders  #vwd  #vonwillebranddisease #womenbleedtoo #podcast  #chornicillness #rarediseases Support the show

    1h 41m

  6. 10/14/2024

    For women, the first line of defense may be with your OBGYN - Dr. Bivin Von Almen

    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 conditions, like von Willebrands disease, which often go undiagnosed, leaving many women to suffer in silence. Imagine the anguish of undergoing unnecessary hysterectomies or enduring severe health issues simply because of a lack of awareness. Our conversation takes a deep dive into the barriers these women face, particularly in rural healthcare settings, and highlights the crucial role of family history in diagnosis. Dr. Von Almen passionately discusses the importance of education among obstetricians and the life-saving potential of pre-treatment with factor therapy. Stories of patient persistence and self-advocacy are powerful reminders of the need for informed and proactive healthcare management. Dr. Von Almen also shares his heartfelt reasons for joining Hope and his dedication to addressing the underappreciation and mistreatment of women, especially those facing racial disparities. We explore Hope's mission to empower patients with knowledge and advocate for better healthcare outcomes. By connecting with Hope and tapping into resources at hope-charities.org, you can join this vital movement and make a difference in your health journey. Don't miss this compelling episode that educates and inspires action and change. Support the show

    48 min

  7. 08/12/2024

    Dads helping daughters with hemophilia

    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 Naomi have grown closer together as a family and are now on a mission to advocate for other women to challenge outdated clinical standards for women with bleeding disorders This episode was made possible by an unrestricted educational grant provided by Genentech.  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 tangible support. To learn more about our programs visit our website www.hope-charities.org.  Audio versions of this podcast are available on Spotify, Apple, iHeart radio and anywhere you listen to podcasts. Subscribe to our podcast to listen to more inspiring interviews like this today.  Spotify: https://open.spotify.com/show/7mHb8FnlHmOz0PBcv6kQ8p?si=hlBA_VPsTmaJTbOmkQyvNg Apple: https://podcasts.apple.com/us/podcast/hope-charities/id1613823273 iHeart: https://www.iheart.com/podcast/269-hope-charities-93979933/ #chronicillness #bleedingdisorders  #WomenBleedToo  #youarenotalone #hemophilia  #HemoGlo #advocate #healthcare Support the show

    1h 25m

  8. 09/22/2023

    Claudio Sandoval shares insights on his session at Joint Health on Sept 26 & 27

    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 Health. REGISTER NOW for free access to all live sessions, where we will discuss this topic and many more, as well as live Q&A  with our expert speakers! https://www.hopeforhemophilia.org/joint-health-conference-2023.html 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 tangible support. To learn more about our programs visit our website www.hope-charities.org.  #JointHealth #bleedingdisorders  #hemophilia  #Octapharma  #FactorVIII #FVIII Support the show

    9 min
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Ratings & Reviews

4.8
out of 5
5 Ratings

About

Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.

Information

  • Creator
    Jonathan James
  • Years Active
    2022 - 2025
  • Episodes
    22
  • Rating
    Clean
  • Copyright
    © 2025 Hope Charities
  • Show Website
    Hope Charities