The Grace, Grief and Grit Podcast

By: Dee Daniels Media Podcast Network
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  • Summary

  • Epidermolysis Bullosa is often called the worst disease you’ve never heard of. The Grace, Grief and Grit Podcast along with the nonprofit organization Heroes for Hallie Grace, will shine a light on this rare condition that affects 200,000 families every year. While there are limited treatment options, currently there is no known cure. In this podcast, we will highlight the legacy of Hallie Grace who fought Junctional Epidermolysis Bullosa (JEB) with her family’s support for three months. Her family, Anne and Joe Davis, continue to raise awareness and funds to help further research in finding better treatments and ultimately a cure - and to help other families who are walking this journey.
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Episodes
  • Integrative Health Therapy with Desiree Sparrow: Mindfulness and Self-Care

    Integrative Health Therapy with Desiree Sparrow: Mindfulness and Self-Care
    Nov 21 2024
    In this episode of the 'Grace, Grief and Grit' podcast, hosts Dee Daniels and Ann Davis welcome special guest Desiree Sparrow, an integrative health therapist, yoga instructor, and minister - who also works at a Children's Hospital in Philadelphia. --- Desiree shares her journey into integrative health, driven by her personal history with anxiety and trauma. The conversation delves into the importance of mindfulness, meditation, and yoga as tools for managing stress, medical conditions, and rare diseases. Desiree discusses practical techniques such as sensory anchoring and the RAIN method to help caregivers and patients regulate their nervous systems. She also emphasizes the significance of self-care and self-love, breaking down the misconceptions about yoga and mindfulness practices. --- This episode provides valuable insights and practical advice for anyone seeking to incorporate these practices into their daily lives to improve mental and physical well-being.

    Thank you for listening!

    Learn more about EB and the voices in this episode:

    Tap HERE to connect with Desiree

    Tap HERE to connect with Hallie's Story

    EB in depth

    Meet the family behind Heroes for Hallie Grace

    Donate and Join the Fight

    Proudly hosted and produced by Dee Daniels Media
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    52 mins
  • Navigating Hope: Conversations with EBRP's CEO Michael Hund

    Navigating Hope: Conversations with EBRP's CEO Michael Hund
    Nov 8 2024

    In this episode of the Grace Grief and Grit podcast, hosts Dee Daniels and Ann and Joe Davis sit down with Michael Hund, the CEO of EB Research Partnership (EBRP).

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    Michael shares the mission of EBRP, which is the largest global organization dedicated to treating and curing epidermolysis bullosa (EB). They discuss Michael's journey in joining EBRP in 2017, the learning experiences along the way, and the transformative impact of his work.

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    Michael emphasizes the importance of hope in the EB community and highlights the broad range of ongoing research projects aimed at treating various subtypes of EB. The conversation wraps up with a call to action for listeners to get involved and support the EB community in any way they can.

    Thank you for listening!

    Learn more about EB and the voices in this episode:

    Meet Michael Hund and LEARN MORE about EBRP

    Tap HERE to connect with Hallie's Story

    EB in depth

    Meet the family behind Heroes for Hallie Grace

    Donate and Join the Fight

    Proudly hosted and produced by Dee Daniels Media
    Show More Show Less
    43 mins
  • Connections: Capturing the Story with Lyle Dillie

    Connections: Capturing the Story with Lyle Dillie
    Sep 19 2024

    Meet Lyle Dillie! For dependable photography and videography services that offer quality outcomes with professionalism and attention to detail, your search ends here. We're so thankful to Lyle for providing top-notch videography services for the 3rd Annual Hallie Grace Memorial Ball for EB.

    Lyle's expertise lies in Portrait, Nature, and Commercial Photography. He strives to create a comfortable atmosphere to naturally capture people's interactions. Additionally, he is passionate about nature photography, aiming to encapsulate Georgia's scenic beauty during each of the four seasons.

    Thank you for listening!

    Learn more about EB and the voices in this episode:

    Meet Lyle Dillie

    Tap HERE to connect with Hallie's Story

    EB in depth

    Meet the family behind Heroes for Hallie Grace

    Donate and Join the Fight

    Proudly hosted and produced by Dee Daniels Media
    Show More Show Less
    1 hr

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