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The Grace, Grief and Grit Podcast

The Grace, Grief and Grit Podcast

By: Dee Daniels Media Podcast Network
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About this listen

 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.
Episodes
  • Over the Rainbow: Hallie Grace's Legacy and The Butterfly Ball

    Over the Rainbow: Hallie Grace's Legacy and The Butterfly Ball
    Mar 3 2026

    Producer Dee Daniels welcomes listeners back to the Grace, Grief and Grit podcast with guests Anne and Joe Davis to reintroduce Hallie Grace’s story, share updates in the Epidermolysis Bullosa (EB) community, and preview this year’s Butterfly Ball.

    Anne and Joe recount Hallie Grace’s birth on June 5, 2021, her early mild symptoms, and her diagnosis after genetic testing of severe junctional Epidermolysis Bullosa. They describe the realities of EB care—painful skin breakdown from friction and heat, lengthy diaper changes with special supplies, and frequent full-body bandage changes—along with Hallie’s beautiful personality, early milestones, and their deep connection with her.

    Anne explains how they chose to “parent Hallie still” by founding the nonprofit Heroes for Hallie Grace (officially formed March 2022) to raise awareness, support families, and fund research toward treatments and an eventual cure. They outline key initiatives including Wings of Care (helping EB families with individualized needs like equipment and home items), personalized memorial boxes for families who have lost a loved one, and butterfly bundle welcome boxes for newly diagnosed babies and their families. They also discuss ongoing advocacy and connection work with EB organizations, researchers, doctors, and pharmaceutical companies, and Anne’s focus on mental health support as a trauma-specialized clinical psychologist.

    The episode highlights the annual Butterfly Ball—held the first Friday in June—as a joyful community-building fundraiser featuring food, music, silent auction, and a butterfly release. This year marks the 5th annual event on June 5 (Hallie’s birthday and “golden birthday” year), themed “Somewhere Over the Rainbow,” inspired by a triple rainbow that appeared during last year’s butterfly release. Tickets are on sale now!

    IMPORTANT LINKS:

    Butterfly Warrior: The Story of Hallie Grace Documentary || Watch Now

    A Beautiful Soul Who Left an Impact

    Learn more about ways you can help and join the fight

    Grab your TICKETS here for the 5th Annual Hallie Grace Memorial Butterfly Ball

    FIND A FAVORITE SPOT IN THIS EPISODE:

    00:00 Podcast Return and Updates

    01:52 Hallie Grace Birth and Early Signs

    04:04 EB Diagnosis and Daily Care

    06:20 Hallie Personality and Bond

    12:05 Medical Escalation and Loss

    16:32 Finding Purpose After Grief

    20:52 Nonprofit Support and Wings of Care

    24:30 Memorial Boxes and Lasting Love

    26:54 Memorial Boxes Purpose

    27:28 Butterfly Bundle Welcome

    28:04 Funding EB Treatments

    29:42 Awareness Events Films

    31:24 How to Donate Directly

    33:22 Building Community Connections

    34:43 Education Patient Advocacy

    37:11 Mental Health Support

    39:51 Butterfly Ball Origins

    43:06 Rainbow Theme Golden

    46:01 Tickets Top Hats

    49:58 Savannah Travel Wrap

    50:40 Final Links

    Show More Show Less
    54 mins
  • The Power of Support in Grieving: Betsy Kammerud on Helping Children Heal

    The Power of Support in Grieving: Betsy Kammerud on Helping Children Heal
    Aug 22 2025
    In this heartfelt episode of the Grace, Grief, and Grit podcast, producer Dee Daniels and co-host Anne Davis welcome Betsy Kammerud, a bereavement counselor from Hospice Savannah. The discussion centers around dealing with grief, especially for children who have lost a loved one. It begins with the poignant story of Hallie Grace, whose life was touched by a rare genetic disorder. The episode delves into the importance of creating safe spaces for expressing grief, the role of self-compassion, and the impact of continued bonds with deceased loved ones. Betsy offers practical advice and resources for helping children navigate their emotions, emphasizing the significance of group support and creative therapeutic activities. The conversation also highlights the value of self-care for parents and caregivers, ensuring they can offer the best support to grieving children. Join this insightful episode to learn more about the compassionate work being done to support grieving families and discover resources to assist those on their grief journey.

    Learn more about EB and the voices in this episode:

    Meet Betsy

    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: Podcast Production, High-Quality Editing, Content Coaching, and Show Promotion

    00:00 The Story of Hallie Grace

    00:56 Introduction to the Podcast

    01:08 Recap of the Ball Event

    02:59 Introducing Special Guest Betsy Kammerud

    05:04 Betsy's Journey into Hospice and Grief Work

    06:39 The Importance of Safe Spaces for Grieving Children

    10:22 Addressing Children's Grief and Guilt

    22:58 Therapeutic Activities for Grieving Children

    32:31 Supporting Grieving Children in School and Community

    37:11 Introduction to Grief in Literature

    37:43 Understanding Pre-Bereavement

    39:12 Hopes and Examples in Grief

    40:55 Book Recommendations for Grieving Children

    43:32 Resources for Grief Support

    51:48 The Importance of Self-Care and Self-Compassion

    01:00:38 Maintaining Connections with Loved Ones

    01:04:12 Conclusion and Final Thoughts
    Show More Show Less
    1 hr and 7 mins
  • Countdown to the 4th Annual Hallie Grace Memorial Butterfly Ball for EB

    Countdown to the 4th Annual Hallie Grace Memorial Butterfly Ball for EB
    May 22 2025
    In this heartfelt episode of the 'Grace, Grief, and Grit' podcast, producer Dee Daniels joins Anne and Joe Davis as they prepare for the fourth annual Hallie Grace Memorial Butterfly Ball for EB. Anne and Joe discuss their journey with Heroes for Hallie Grace, their nonprofit organization founded in memory of their daughter, Hallie Grace. --- They talk about the impactful initiatives they have launched, including the Butterfly Bundle Welcome Boxes, Wings of Care, and the Forever in Flight Memorial Boxes, emphasizing the personalized care and support provided to families affected by EB. The episode also highlights the upcoming ball's new venue at the Morris Center, the planning that goes into the event, and the excitement surrounding the community's participation and contributions. Listeners are encouraged to support the cause and experience the inspiring stories of families within the EB community. GRAB YOUR TICKETS TO THE BALL HERE

    We are officially a 501(c)(3) organization, and our Mission is three-fold: 1. Raise Awareness 2. Fund vital research and 3. Aid children with EB and their families in any way we can. We take in donations for the following purposes:

    Put on Fundraisers or other Events to further support our cause and raise awareness

    Partner with and donate to other well-known EB-related foundations and medical professionals/researchers working hard to support EB families and find treatments/an eventual cure

    Send free, customized "Butterfly Bundle" Welcome Boxes to support new EB families with bamboo clothing, special blankets, self-care and family-building items, books, and resources/support for all members of the family, including siblings

    Meeting the needs of individuals and their families still living with EB by filling any gaps with our "Wings of Care" initiative (examples include providing emotional support, finding resources, or providing much needed medical supplies, special clothing, equipment, etc. depending on what the individual or family needs in that moment)

    Support families that have lost a loved one to EB with free, specially curated "Forever in Flight" Memorial Boxes, resources in their area, and ongoing support as well

    Work with the EB Community as a whole to develop educational materials for doctors and families based on patient/family experiences to help make navigating EB at least somewhat easier for everyone involved and presenting these materials at conferences and other related events to reach as many people as possible.

    LEARN MORE AND HELP IN THE FIGHT
    Show More Show Less
    39 mins
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