The Grace, Grief and Grit Podcast

著者： Dee Daniels Media Podcast Network
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  • 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.
    Copyright 2023 All rights reserved.
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あらすじ・解説

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.
Copyright 2023 All rights reserved.
絵本・児童書
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エピソード
  • Uniting for Change: A Conversation & Call-to-Action on Giving Tuesday

    Uniting for Change: A Conversation & Call-to-Action on Giving Tuesday
    2024/12/03

    In this special episode of the Grace Grief and Grit podcast, producer Dee Daniels hosts a full house featuring Jenny Brewster, Tyler Cobb, and Megan Mason, all board members of Heroes for Hallie Grace. The group shares personal stories about how they became involved with the nonprofit and discusses the crucial mission of supporting families affected by Epidermolysis Bullosa (EB).

    ---

    They highlight various ways the community can contribute, including becoming a Hallie's Hero through monthly donations, participating in the annual Butterfly Ball, and supporting the organization's fundraising efforts. The episode emphasizes the importance of Giving Tuesday and aims to inspire listeners to donate and assist in the fight against EB. Key actions include visiting the website HallieFlies.com, following Tiny Butterfly Warrior on social media, and spreading the word about the organization's impactful work.

    Thank you for listening!

    Learn more about EB and the voices in this episode:

    Tap HERE to become a HALLIE HERO

    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 分
  • Integrative Health Therapy with Desiree Sparrow: Mindfulness and Self-Care

    Integrative Health Therapy with Desiree Sparrow: Mindfulness and Self-Care
    2024/11/21
    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 分
  • Navigating Hope: Conversations with EBRP's CEO Michael Hund

    Navigating Hope: Conversations with EBRP's CEO Michael Hund
    2024/11/08

    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.

    ---

    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
    続きを読む 一部表示
    43 分

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