Producer Dee Daniels hosts Grace, Grief and Grit with Heroes for Hallie Grace board members Randi Hempel-Adams - Co-Owner of Coastal Pickleball, Cindy Brown - Co-Owner All About You Entertainment, and Derek Llamas - Owner of Coastal Strategy Group to discuss their connections to Hallie Grace and the rest of the family, personal experiences with loss, and the mission to support families affected by epidermolysis bullosa (EB) and fund research for a cure.

They highlight the organization’s growth beyond Savannah through speaking engagements and butterfly care bundles, and promote the annual Butterfly Ball on June 5, themed “Over the Rainbow” for Hallie’s fifth (golden) birthday, including a butterfly release, music, food, and a silent auction.

The episode outlines sponsorship and donation options (including DJ/photo booth, auction items, and volunteering), encourages ticket purchases and sharing the cause, and notes fundraising goals such as eventually funding paid staff.

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 Meet the Board

00:23 Randy Story and Mission

01:09 Jack and Loss Journey

03:16 Fundraising Role on Board

04:25 Cindy Entertainment Roots

06:17 Butterfly Ball Memories

08:31 Derek Joins the Cause

12:17 Golden Birthday Rainbow Theme

15:18 Growth Beyond Savannah

20:10 Sponsors and Perks

22:19 Butterfly Ball Vibe

22:48 Why You Should Attend

23:48 Silent Auction Highlights

25:06 Sponsorship Value

26:35 Butterfly Bundles Impact

32:29 Tickets and Early Bird

34:29 Auction From Anywhere

35:34 Final Ways to Help

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