15 episodes

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.

The Grace, Grief and Grit Podcast Dee Daniels Media Podcast Network

    • Education
    • 5.0 • 8 Ratings

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.

    THIS is what a Support Team looks like! Life Grows Around the Grief: Parents Holding Space for Parents

    THIS is what a Support Team looks like! Life Grows Around the Grief: Parents Holding Space for Parents

    "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

    • 1 hr 17 min
    Looking Back and Looking Foward with Epidermolysis Bullosa | ft. Dr. Peter Marinkovich

    Looking Back and Looking Foward with Epidermolysis Bullosa | ft. Dr. Peter Marinkovich

    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

    • 59 min
    A New Season: Lasting Legacy, Inspiring Impact!

    A New Season: Lasting Legacy, Inspiring Impact!

    Welcome to Season 2 of the Grace, Grief and Grit Podcast! 
    We're proud to kick off this new season with Anne and Joe Davis at the table to discuss the upcoming 3rd Annual Butterfly Ball for EB. On this episode, you'll get to know more about Epidermolysis Bullosa as well as the impact Heroes for Hallie Grace is having - and wants to have within the EB community. 
    As we continue to honor the life and legacy of Hallie Grace Davis, we also look towards the future - and we see the needs in front of us. We see families in need of comfort, education, and support. We see the need for funding more research that will result in more therapies to treat EB - and one day a cure! 
    You can help by joining us at the upcoming Butterfly Ball - June 7, 2024 at 6pm at Savannah Station. Get your tickets now! 3rd Annual Butterfly Ball for EB - Get tickets here!
    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
    Donate and Join the Fight
    Proudly hosted and produced by Dee Daniels Media
     
     

    • 49 min
    Kids Grief Support, ft. Child Life Specialist Jessica Correnti

    Kids Grief Support, ft. Child Life Specialist Jessica Correnti

    This is a "lean-in" episode with our special guest Jessica Correnti who is a Certified Child-Life Specialist, an author, and the owner of Kids Grief Support. 
    Kids Grief Support is a child life private practice that provides support, consultation, and therapeutic interventions for children and families that are grieving the death of a loved one, coping with a new diagnosis, or going through a major life transition. Kids Grief Support works with caregivers, children, and teens to support them through these life stressors and tragedies. Kids Grief Support offers in person and telehealth virtual services.
    Jessica leaves us with an open door to not only feel all of our emotions, but she also shows us some very valuable tools we can all use to navigate the journey. 
    Learn more about the voices in this episode:
    Learn more about Kids Grief Support
    Resources & Children's Grief Books
    Heroes for Hallie Grace, Inc.
    Proudly hosted and produced by Dee Daniels Media

    • 53 min
    Savannah Ghost Pirates - EB Awareness Night is COMING!!

    Savannah Ghost Pirates - EB Awareness Night is COMING!!

    February 23rd is the NIGHT to shine a LIGHT on EB Awareness with the Savannah Ghost Pirates at Enmarket Arena - it's HEROES FOR HALLIE GRACE night! 
    We're sitting down with Cassie Geer with the Savannah Ghost Pirates to chat about this awesome event. Make sure to tap the links below to purchase your tickets for the game! 
    GET TICKETS TO THE GAME ------> SAVANNAH GHOST PIRATES ticket link
    Learn more about the voices in this episode:
    Heroes for Hallie Grace EVENTS
    Hallie's Story - Learn more about EB
    Proudly produced by Dee Daniels Media

    • 11 min
    Siblings of EB - The Faces and Hearts of True Support

    Siblings of EB - The Faces and Hearts of True Support

    A few episodes back we had a chance to sit down and chat with Hodges R. Caldwell Jr. - one of the most dynamic, inspiring individuals you'll ever get to know. Hodges was born in 1979 in Virginia and in his words, "looked pretty normal as a baby". At six-months old, Hodges developed a blister on his right side. Even though doctors told Hodges' mom that it would go away, it never did. It actually got bigger until it finally burst giving the appearance that he had been burned. 
    It was finally at a hospital in Bethesda, Maryland that Hodges was diagnosed with EB.
    On this episode we are thrilled to sit down with Hodges' sister Sarah Groome and hear her journey of support and love. 
    Learn more about the voices in this episode:
    Hodges Coldwell Jr. - Personal Journey
    EB LifeStyle Inc - Learn how you can help the EB Community
    Heroes for Hallie Grace, Inc.
    Proudly hosted and produced by Dee Daniels Media

    • 56 min

Customer Reviews

5.0 out of 5
8 Ratings

8 Ratings

Amanda Marie Y. ,

A wonderful podcast for an amazing cause!

Thank you for sharing your story!

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