The Grace, Grief and Grit Podcast  Por  arte de portada

The Grace, Grief and Grit Podcast

De: Dee Daniels Media Podcast Network
  • Resumen

  • 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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Episodios
  • Grief: Exploring the Communication of Emotions with Dr. Nicholas Christakis
    Jul 18 2024

    Nicholas A. Christakis, MD, PhD, MPH, professor at Yale University, is a sociologist and physician who conducts research in the areas of social networks and biosocial science. He directs the Human Nature Lab.

    The author of four books and over 200 articles, Christakis was elected to the Institute of Medicine of the National Academy of Sciences in 2006 and was made a Fellow of the American Association for the Advancement of Science in 2010 and a Fellow of the American Academy of Arts and Sciences in 2017.

    On this episode we are talking to Nicholas about his book, "BLUEPRINT: The Evolutionary Origins of a Good Society". In Blueprint, he introduces the compelling idea that our genes affect not only our bodies and behaviors, but also the ways in which we make societies, ones that are surprisingly similar worldwide.

    He brings some impactful questions related to grief to the table, like: Why do we have this capacity for grief? Why is it helpful for us as humans to have the experience of the emotions around grief?

    "Emotions are a very primitive form of communication that far preceded our capacity for language - it's a more sophisticated type of communication."

    Thank you for listening!

    Learn more about EB and the voices in this episode:

    Meet Dr. Nicholas Christakis

    Learn more about the book "Blueprint: The Evolutionary Origins of a Good Society"

    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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    59 m
  • THIS is what a Support Team looks like! Life Grows Around the Grief: Parents Holding Space for Parents
    Apr 29 2024

    "It's not, obviously, the way we would want to meet, but I'm so grateful that we did" - Anne Davis says this in regard to becoming "chosen family" with Kaytlynn and Anthony - parents of Addilynn Grace - who had severe Junctional EB - and passed away on December 22, 2022.

    Katlynn and Anthony include Addilynn in everything they do. They also do so much to raise awareness about Epidermolysis Bullosa. Both families take much needed time in this episode to hold space for the grief journey and share stories about their beautiful "butterfly" children.

    Anthony says, "looking back - we were so worried about taking care of her - we didn't realize she was the one taking care of us".

    Thank you for listening!

    Learn more about EB and the voices in this episode:

    EB in depth

    Meet the family behind Heroes for Hallie Grace

    BUY YOUR TICKETS to the 3rd Annual Butterfly Ball

    Donate and Join the Fight

    Proudly hosted and produced by Dee Daniels Media

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    1 h y 18 m
  • Looking Back and Looking Foward with Epidermolysis Bullosa | ft. Dr. Peter Marinkovich
    Mar 28 2024

    We're grateful to be joined on this episode by Dr. Peter Marinkovich - Associate Professor of Dermatology, a faculty member of the Program in Epithelial Biology and the Stanford Cancer Biology Program.

    We're taking a deep-dive into the history - as well as the available treatments and current research - of Epidermolysis Bullosa.

    Dr. Marinkovich has an interest in inflammatory skin disease and is Director of the Stanford Bullous Disease and Psoriasis Clinics as well as an attending dermatologist at the VA Palo Alto Medical Center. Dr. Marinkovich’s research focuses on pathogenesis and therapy of epidermolysis bullosa, autoimmune blistering diseases, psoriasis and skin cancer.

    Thank you for listening!

    Learn more about EB and the voices in this episode:

    EB in depth

    Meet Dr. Peter Marinkovich

    Meet the family behind Heroes for Hallie Grace

    BUY YOUR TICKETS to the 3rd Annual Butterfly Ball

    Donate and Join the Fight

    Proudly hosted and produced by Dee Daniels Media

    Más Menos
    59 m

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