The Grace, Grief and Grit Podcast

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

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 

The Power of Support in Grieving: Betsy Kammerud on Helping Children Heal

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

Countdown to the 4th Annual Hallie Grace Memorial Butterfly Ball for EB

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.
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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

Unbearable Burden: Navigating Grief in Unimaginable Circumstances with Krista Isaacson

In this poignant episode of the Grace, Grief, and Grit podcast, hosts Dee Daniels and Joe Davis engage in a heartfelt conversation with Krista Isaacson, a wife, mother of six, and author of 'Unbearable Burden.'
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Krista shares the devastating experience of losing her daughter Elora to a cancerous brain tumor and the emotional journey that followed. Through vivid storytelling, Krista recounts moments from Elora's life, the sudden discovery of her illness, and the difficult decision to remove her from life support. The discussion also touches on Krista's subsequent pregnancy, the healing process, and the impact of Elora's memory on her family. This episode is a profound exploration of love, loss, and the enduring strength of a grieving mother.
Learn more about EB and the voices in this episode:
MEET Krista Isaacson
READ 'Unbearable Burden'
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

Navigating Life with Grace: Ariana Covarrubias on EB, Resilience, and Authenticity

In this episode of the Grace, Grief and Grit podcast, producer Dee Daniels and host Anne Davis welcome their special guest, Ariana Covarrubias.
 
Ariana, a 25-year-old from Los Angeles living with Recessive Dystrophic Epidermolysis Bullosa (EB), shares her inspiring journey of resilience and authenticity. She discusses the challenges and personal growth stemming from her condition, the importance of mental health and vulnerability, and her passion for makeup and content creation.
 
Ariana's story is a powerful testament to the strength of the human spirit and the impact of sharing one's true self. Listeners will find valuable insights into living with a rare condition, the evolution of resources and community support, and the significance of open conversations about difficult topics.
Learn more about EB and the voices in this episode:
MEET Ariana Covarrubias
Reclaiming Beauty: Ariana Covarrubias and the ONE/SIZE Campaign
SUBSCRIBE and MEET Ariana on YouTube
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

Season 3 Kickoff: Sippin' on Grace, Grit, and Community

In this episode of the Grace Grief and Grit podcast, hosts Dee Daniels and Anne Davis talk with Marianne Ganem Poppell, owner of Savannah Master Calendar and local business advocate, about the importance of connections and community.
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The conversation highlights Marianne's diverse roles in supporting local businesses and nonprofits, including her work with Savannah Master Calendar, Simply Savannah Marketing, and various local boards. They discuss the successful 'Sips at the Station' networking events at Ardsley Station, benefiting different nonprofits monthly.
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The episode also covers the upcoming events, including a Sips at the Station night on March 18th benefiting Heroes for Hallie Grace, and plans for further community engagement.
Learn more about EB and the voices in this episode:
Meet Marianne & Savannah Master Calendar
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

Finding Strength in Vulnerability: A Father's Journey Through Grief

Welcome to the Grace, Grief and Grit Podcast Season 2 Finale. Join host Dee Daniels as she sits down for an emotional and inspiring conversation with Joe Davis, a father who has bravely shared his journey of losing a child.
 
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In this reflective episode, Joe opens up about the progress he's made since his last appearance, his struggles with vulnerability, dealing with triggers and grief, and the complexities of maintaining his faith. Joe also discusses the importance of being a vulnerable sounding board for others, the difficult balance of recalling certain memories as time goes on, and the hopeful advancements in EB research.
 
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This episode honors the strength and resilience it takes to navigate life's most profound losses while still finding moments of connection and joy.
 
Thank you for listening! Please rate and review this podcast - and share the episode with others to help spread awareness of the continuous work to find a cure for EB.
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

A Night of Stars and Strength: The LA "Rock4EB" Experience

In this episode of the Grace Grief and Grit podcast, producer Dee Daniels interviews Anne and Joe Davis about their impactful trip to Los Angeles for the Rock4EB event.
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They discuss the significance of the event, designed to raise awareness and funds for Epidermolysis Bullosa (EB), and their personal experiences meeting notable celebrities like Brad Pitt and Courteney Cox.
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The Davises share stories of kindness and generosity from the attendees, the emotional connections made, and the impressive sum of over a million dollars raised for EB research. They reflect on the importance of unity among EB organizations and how events like these inspire further growth and collaboration.
Thank you for listening! 
Learn more about EB and the voices in this episode:
Learn more about EBMRF
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

From Awareness to Acceptance: The Power of Inclusion with Author Dennis Vanasse

Welcome to the 'Grace, Grief and Grit' Podcast! 
In this episode, producer Dee Daniels and co-host Joe Davis welcome a very special guest - educator and author, Dennis Vanasse. Dennis shares his journey of writing inclusive children's books, focusing especially on his book 'Everyone Belongs' which discusses Epidermolysis Bullosa (EB).
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The conversation delves into Dennis's inspiration, the impact of his work, and the importance of acceptance and awareness in education. Dennis's background in special education and his personal experiences shape a compelling narrative around inclusivity and understanding. The episode also highlights advancements in EB treatments and the ongoing efforts to foster a supportive community for individuals with EB.
 
Thank you for listening! 
Learn more about EB and the voices in this episode:
Find Dennis on Instagram
Tap HERE to see all of Deniss Vanasse's books
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

Uniting for Change: A Conversation & Call-to-Action on Giving Tuesday

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).
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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