"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