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.
"It's not, obviously, the way we would want to meet, but I'm so grateful that we did" - Anne Davis says this in regard to becoming "chosen family" with Kaytlynn and Anthony - parents of Addilynn Grace - who had severe Junctional EB - and passed away on December 22, 2022.
Katlynn and Anthony include Addilynn in everything they do. They also do so much to raise awareness about Epidermolysis Bullosa. Both families take much needed ti...
We're grateful to be joined on this episode by Dr. Peter Marinkovich - Associate Professor of Dermatology, a faculty member of the Program in Epithelial Biology and the Stanford Cancer Biology Program.
We're taking a deep-dive into the history - as well as the available treatments and current research - of Epidermolysis Bullosa.
Dr. Marinkovich has an interest in inflammatory skin disease and is Director of the Stanford Bullous D...
Welcome to Season 2 of the Grace, Grief and Grit Podcast!
We're proud to kick off this new season with Anne and Joe Davis at the table to discuss the upcoming 3rd Annual Butterfly Ball for EB. On this episode, you'll get to know more about Epidermolysis Bullosa as well as the impact Heroes for Hallie Grace is having - and wants to have within the EB community.
As we continue to honor the life and legacy of Hallie Grace Davis, we ...
This is a "lean-in" episode with our special guest Jessica Correnti who is a Certified Child-Life Specialist, an author, and the owner of Kids Grief Support.
Kids Grief Support is a child life private practice that provides support, consultation, and therapeutic interventions for children and families that are grieving the death of a loved one, coping with a new diagnosis, or going through a major life transition. Kids Grief Suppo...
February 23rd is the NIGHT to shine a LIGHT on EB Awareness with the Savannah Ghost Pirates at Enmarket Arena - it's HEROES FOR HALLIE GRACE night!
We're sitting down with Cassie Geer with the Savannah Ghost Pirates to chat about this awesome event. Make sure to tap the links below to purchase your tickets for the game!
GET TICKETS TO THE GAME ------> SAVANNAH GHOST PIRATES ticket link
Learn more about the voices in this episo...
A few episodes back we had a chance to sit down and chat with Hodges R. Caldwell Jr. - one of the most dynamic, inspiring individuals you'll ever get to know. Hodges was born in 1979 in Virginia and in his words, "looked pretty normal as a baby". At six-months old, Hodges developed a blister on his right side. Even though doctors told Hodges' mom that it would go away, it never did. It actually got bigger until it finally burst giv...
Matthew Gantz is President and Chief Executive Officer of Castle Creek Biosciences, Inc., and he is our guest on this amazingly informative episode. Matt is an accomplished life sciences executive with more than 25 years of experience in the specialty biopharmaceutical and medical device industries.
He shares his perspective about the work and research that is going on to help in the fight for treatments and a cure for Epidermolys...
Meet Hodges R. Caldwell Jr. - one of the most dynamic, inspiring individuals you'll ever get to know. Hodges was born in 1979 in Virginia and in his words, "looked pretty normal as a baby". At six-months old, Hodges developed a blister on his right side. Even though doctors told Hodges' mom that it would go away, it never did. It actually got bigger until it finally burst giving the appearance that he had been burned.
It was final...
What a beautiful time of the year to talk about giving the gift of support. Anne and Joe Davis are taking a moment to focus on the conversation around the needs within the EB community and the growth of this nonprofit organization. There are so many ways to champion the work including: podcast sponsorship (by season or by episode), partnerships at the Annual Hallie Grace Memorial Butterfly Ball for EB, volunteer opportunities, fund...
Welcome to a compelling episode that takes you on an inspiring journey with Joe and Anne Davis as they passionately support the research of finding treatments and a cure for Epidermolysis Bullosa (EB). Join us on a whirlwind tour of two recent benefits - EB Research Partnership in Seattle and debra of America in Atlanta.
Tune in to explore the profound impact of these gatherings at the intersection of advocacy, research, and commu...
It's Mom's turn! We're sitting down with Anne Davis, the mother of Hallie Grace, a beautiful baby girl who battled a rare and devastating condition called Junctional Epidermolysis Bullosa (JEB). Anne is sharing her deepest thoughts, struggles, milestones, ups, downs, joys and worries with us on this emotional episode. She also details the challenges of navigating social media and public perception when it comes to be...
On this emotionally charged episode, we have the privilege of sitting down with Joe Davis, the father of Hallie Grace, a beautiful baby girl who battled a rare and devastating condition called Junctional Epidermolysis Bullosa (JEB). Join us as we delve into Joe's personal journey and gain invaluable insights into his experience as a father to a child with this rare disease. Through Joe's candid account, we hope to ra...
In this episode, we explore the serendipitous meeting between Anne, Hallie Grace's mother, and the talented singer-songwriter who shares the same name - Hallie Grace. As they discuss the creation of the song, both Anne and Hallie express their profound gratitude and admiration for each other. The song serves as a tribute to Hallie Grace and all children battling epidermolysis bullosa (EB), a rare genetic condition that causes fragi...
In the inaugural episode of the Grace, Grief and Grit Podcast, we dive into the heartbreaking yet inspiring story of Hallie Grace, a young warrior who battled Junctional Epidermolysis Bullosa (JEB). Epidermolysis Bullosa (EB), often referred to as the "worst disease you've never heard of," affects 200,000 families annually, causing severe skin fragility and blistering.
Join us as we explore the legacy of Hallie Grace, a beacon of s...
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