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

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

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

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

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

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

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

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