"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 time in this episode to hold space for the grief journey and share stories about their beautiful "butterfly" children.

Anthony says, "looking back - we were so worried about taking care of her - we didn't realize she was the one taking care of us".

Thank you for listening!

Learn more about EB and the voices in this episode:

EB in depth

Meet the family behind Heroes for Hallie Grace

BUY YOUR TICKETS to the 3rd Annual Butterfly Ball

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

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 Disease and Psoriasis Clinics as well as an attending dermatologist at the VA Palo Alto Medical Center. Dr. Marinkovich’s research focuses on pathogenesis and therapy of epidermolysis bullosa, autoimmune blistering diseases, psoriasis and skin cancer.

Thank you for listening!

Learn more about EB and the voices in this episode:

EB in depth

Meet Dr. Peter Marinkovich

Meet the family behind Heroes for Hallie Grace

BUY YOUR TICKETS to the 3rd Annual Butterfly Ball

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

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 also look towards the future - and we see the needs in front of us. We see families in need of comfort, education, and support. We see the need for funding more research that will result in more therapies to treat EB - and one day a cure!

You can help by joining us at the upcoming Butterfly Ball - June 7, 2024 at 6pm at Savannah Station. Get your tickets now! 3rd Annual Butterfly Ball for EB - Get tickets here!

Thank you for listening!

Learn more about EB and the voices in this episode:

EB in depth

Meet the family behind Heroes for Hallie Grace

Donate and Join the Fight

Proudly hosted and produced by Dee Daniels Media

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 Support works with caregivers, children, and teens to support them through these life stressors and tragedies. Kids Grief Support offers in person and telehealth virtual services.

Jessica leaves us with an open door to not only feel all of our emotions, but she also shows us some very valuable tools we can all use to navigate the journey.

Learn more about the voices in this episode:

Learn more about Kids Grief Support

Resources & Children's Grief Books

Heroes for Hallie Grace, Inc.

Proudly hosted and produced by Dee Daniels Media

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 episode:

Heroes for Hallie Grace EVENTS

Hallie's Story - Learn more about EB

Proudly produced by Dee Daniels Media

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 giving the appearance that he had been burned.

It was finally at a hospital in Bethesda, Maryland that Hodges was diagnosed with EB.

On this episode we are thrilled to sit down with Hodges' sister Sarah Groome and hear her journey of support and love.

Learn more about the voices in this episode:

Hodges Coldwell Jr. - Personal Journey

EB LifeStyle Inc - Learn how you can help the EB Community

Heroes for Hallie Grace, Inc.

Proudly hosted and produced by Dee Daniels Media

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 Epidermolysis Bullosa (EB). He also talks about the importance of learning all that he can about the children and families affected by this rare and life-threatening skin disorder.

IMPORTANT LINKS AND MORE ABOUT THE VOICES IN THIS EPISODE:

Castle Creek Biosciences, Inc., is a late-stage cell and gene therapy company developing therapies for genetic diseases. Our scientists create optimal therapies that address the distinctive needs of each targeted indication, with an initial focus on skin and connective tissue disorders.

More about Matthew Gantz

HEROES FOR HALLIE GRACE INC. THE STORY OF HALLIE GRACE

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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 finally at a hospital in Bethesda, Maryland that Hodges was diagnosed with EB. Unfortunately, that is all doctors there were able to do - just a diagnosis. They admitted they had no idea how to treat it. The doctors told Hodges' mom they only expected him to live to the age of two. However, mom refused to accept that!

Today, Hodges is the President and CEO of EBLifeStyle Inc - an organization that focuses on the mobility aspect for the EB community. Walking is extremely painful for anyone suffering from Epidermolysis Bullosa. This is why EBLifeStyle Inc donates lightweight, portable mobility aids to the E.B. Community.

Quote from Hodges: "EB to me is - Perfection of imperfection. We adapt and persevere, not by choice, but out of necessity. We are the chosen ones."

Learn more about the voices in this episode:

Hodges Coldwell Jr. - Personal Journey

EB LifeStyle Inc - Learn how you can help the EB Community

Heroes for Hallie Grace, Inc.

Proudly hosted and produced by Dee Daniels Media