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.
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  • 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.

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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
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    43 分
  • Connections: Capturing the Story with Lyle Dillie

    Connections: Capturing the Story with Lyle Dillie
    2024/09/19

    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
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    1 時間
  • Goals, Dreams, and the Power of Connection: We had another BALL!

    Goals, Dreams, and the Power of Connection: We had another BALL!
    2024/09/05

    Anne and Joe Davis are here to celebrate the success of the 3rd Annual Hallie Grace Memorial Ball for EB!

    First - a BIG THANK YOU to all who were able to attend, volunteer, or support in any way. We did reach our financial support goals for the ball!! Secondly, we continue to evolve and grow as an organization. This year we saw firsthand our vision of "more connection" come to the surface.

    Hallie Grace Davis is a beautiful soul that continues to create an impact on our world - and certainly within the EB community. It's not too early for you to be a part of the next ball, as well as help fund the important research that is going on right now for more treatments and a cure.

    Thank you for listening!

    Learn more about EB and the voices in this episode:

    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
    55 分

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