Exploring Nonprofit Impact: 2026 Heroes for Hallie Grace Board Update

Grief at Five Years: Hallie Grace’s Legacy, Time, and Learning to Lean In

Producer Dee Daniels hosts a one-on-one Grace, Grief and Grit podcast episode with Anne Davis reflecting on grief nearly five years after the passing of her daughter Hallie Grace, who was born in 2021 and would turn five on June 5, 2026.   Anne describes how time feels distorted in grief and challenges the idea that “time heals all wounds,” explaining that life grows around grief but the absence can feel sharper as new milestones arise, especially while parenting her living children, Brielle and Evan.   She shares coping tools from therapy, including “starfishing” in quicksand rather than fighting emotions, and discusses navigating new grief as a loved one nears death. Anne and Dee explore isolation across multiple “grief clubs,” society’s discomfort with child loss, and how Hallie’s nonprofit supports EB families through initiatives like memorial boxes, welcome boxes, Wings of Care, and the annual ball [https://hallieflies.com/].   IMPORTANT LINKS: Butterfly Warrior: The Story of Hallie Grace Documentary || Watch Now [https://www.youtube.com/watch?v=taRex1T_q80] A Beautiful Soul Who Left an Impact [https://hallieflies.com/about/] Learn more about ways you can help and join the fight [https://hallieflies.com/join-the-fight/] Grab your TICKETS here for the 5th Annual Hallie Grace Memorial Butterfly Ball [https://my.onecause.com/event/organizations/1bc48a0e-7332-4095-9c71-1c39b6a651de/events/vevt:b6fac35c-bbbc-48af-803b-8ec0dbc1fee3/home/story]   FIND A FAVORITE SPOT IN THIS EPISODE: 00:00 Welcome and Setup 00:42 Hallie Turning Five 05:00 Time and Grief Myth 07:38 Missing Piece Moments 10:25 Shadow Figures Visual 13:19 Holding Two Truths 15:28 New Grief Wave 19:08 Starfish the Quicksand 22:33 Many Grief Clubs 23:52 Isolation in EB Loss 28:03 Grief Feels Different 28:20 Why People Pull Away 31:09 Carrying Others Comfort 31:47 Networking Reactions Sting 33:48 Friends Leave and Shift 35:12 Fundraising Feels Rejected 37:37 Keeping Hallie Present 38:52 Legacy After Loss 43:18 Ways to Lean In 47:08 The Ball Brings Joy 48:45 Hallie Welcomes Families 50:27 Hopeful Fifth Year 51:38 Memorial Boxes Impact 54:36 Final Call to Support

Exploring Nonprofit Impact: 2026 Heroes for Hallie Grace Board Update

Producer Dee Daniels hosts Grace, Grief and Grit with Heroes for Hallie Grace [https://www.hallieflies.com/] board members Randi Hempel-Adams - Co-Owner of Coastal Pickleball, Cindy Brown - Co-Owner All About You Entertainment [https://allaboutyoudjs.com/], 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 [https://www.youtube.com/watch?v=taRex1T_q80] A Beautiful Soul Who Left an Impact [https://hallieflies.com/about/] Learn more about ways you can help and join the fight [https://hallieflies.com/join-the-fight/] Grab your TICKETS here for the 5th Annual Hallie Grace Memorial Butterfly Ball [https://my.onecause.com/event/organizations/1bc48a0e-7332-4095-9c71-1c39b6a651de/events/vevt:b6fac35c-bbbc-48af-803b-8ec0dbc1fee3/home/story]   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

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

Producer Dee Daniels [https://deedanielsmedia.com] welcomes listeners back to the Grace, Grief and Grit podcast [https://open.spotify.com/show/5Cw5oSOdDM9cnTX8z7XHWn?si=f0402e141e214653&nd=1&dlsi=a60d6308c0b343ce] 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 [https://my.onecause.com/event/organizations/1bc48a0e-7332-4095-9c71-1c39b6a651de/events/vevt:b6fac35c-bbbc-48af-803b-8ec0dbc1fee3/home/story].   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. [https://hallieflies.com/donate/] 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! [https://my.onecause.com/event/organizations/1bc48a0e-7332-4095-9c71-1c39b6a651de/events/vevt:b6fac35c-bbbc-48af-803b-8ec0dbc1fee3/home/story]   IMPORTANT LINKS: Butterfly Warrior: The Story of Hallie Grace Documentary || Watch Now [https://www.youtube.com/watch?v=taRex1T_q80] A Beautiful Soul Who Left an Impact [https://hallieflies.com/about/] Learn more about ways you can help and join the fight [https://hallieflies.com/join-the-fight/] Grab your TICKETS here for the 5th Annual Hallie Grace Memorial Butterfly Ball [https://my.onecause.com/event/organizations/1bc48a0e-7332-4095-9c71-1c39b6a651de/events/vevt:b6fac35c-bbbc-48af-803b-8ec0dbc1fee3/home/story]   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, [https://hallieflies.com/] producer Dee Daniels and co-host Anne Davis welcome Betsy Kammerud, a bereavement counselor from Hospice Savannah [https://www.hospicesavannah.org/edel-employee-assistance-program/counseling-with-betsy/].   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 [https://www.hospicesavannah.org/edel-employee-assistance-program/counseling-with-betsy/] Tap HERE to become a HALLIE HERO [https://my.onecause.com/fundraiser/organizations/1bc48a0e-7332-4095-9c71-1c39b6a651de/fundraisers/fundraiser:31550409-e629-490f-a87b-6de8199f7b88] Tap HERE to connect with Hallie's Story [https://hallieflies.com/about/] EB in depth [https://www.debra.org/about-eb/eb-depth] Meet the family behind Heroes for Hallie Grace [https://hallieflies.com/about/] Donate and Join the Fight [https://hallieflies.com/donate/] Proudly hosted and produced by Dee Daniels Media: Podcast Production, High-Quality Editing, Content Coaching, and Show Promotion [https://www.deedanielsmedia.com/]   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 [https://deedanielsmedia.com/] joins Anne and Joe Davis as they prepare for the fourth annual Hallie Grace Memorial Butterfly Ball for EB [https://my.onecause.com/event/organizations/1bc48a0e-7332-4095-9c71-1c39b6a651de/events/vevt:73595464-190b-4e56-bb15-ab58a168fef7/home/story].  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 [https://my.onecause.com/event/organizations/1bc48a0e-7332-4095-9c71-1c39b6a651de/events/vevt:73595464-190b-4e56-bb15-ab58a168fef7/home/story]   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 [https://hallieflies.com/]