The Grace, Grief and Grit Podcast
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.
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Episodes
Thursday Feb 22, 2024
Thursday Feb 22, 2024
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
Monday Feb 12, 2024
Monday Feb 12, 2024
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
Thursday Jan 18, 2024
Thursday Jan 18, 2024
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
Thursday Jan 11, 2024
Thursday Jan 11, 2024
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
Tap here to GIVE a DONATION
Thursday Jan 04, 2024
Thursday Jan 04, 2024
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
Thursday Dec 14, 2023
Thursday Dec 14, 2023
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, funding memorial boxes, and much more.
Get details on how you can support at the links below:
Events
T-Shirts, Podcast Info, and Volunteer Sign-up
Learn more about the voices in this episode:
Get to know Hallie Grace's story
Proudly hosted and produced by Dee Daniels Media
Thursday Dec 07, 2023
Thursday Dec 07, 2023
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 community support. Discover how Joe and Anne's unwavering dedication contributes significantly to advancing knowledge and resources in the ongoing battle against EB. This episode is a testament to the power of individuals coming together to make a difference in the fight against Epidermolysis Bullosa.
Learn more about the voices in this episode:
Joe & Anne Davis
Email: butterfly@hallieflies.com
Facebook - Hallie Grace, Tiny Butterfly Warrior
Instagram - tinybutterflywarrior
Raise Awareness - In Loving Memory of Hallie Grace Davis (hallieflies.com)
Donate to Heroes for Hallie Grace
Hosted & Produced by Dee Daniels with DeeDanielsMedia
Theme song written and performed by Hallie Grace
Friday Oct 27, 2023
Friday Oct 27, 2023
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 being transparent and vulnerable about her journey of grief.
Learn more about the voices in this episode:
• Anne Davis
Email: butterfly@hallieflies.com
Facebook - Hallie Grace, Tiny Butterfly Warrior
Instagram - tinybutterflywarrior
Raise Awareness and Donate for Memory Boxes - In Loving Memory of Hallie Grace Davis (hallieflies.com)
Donate to Heroes for Hallie Grace
Proudly hosted & produced by Dee Daniels with Dee Daniels Media | Podcast Producing and Consulting
Theme song written and performed by Hallie Grace
Wednesday Jun 07, 2023
Wednesday Jun 07, 2023
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 raise awareness and compassion for families affected by JEB. Tune in to this heartfelt episode, where we listen to a father's story of unconditional love, loss, and the power of embracing every precious moment.
UPDATE on NEW EB Treatment
Just days ago, the FDA approved the first official treatment for Dystrophic EB. This is a huge step forward in the EB Community @wefighteb - The FDA has given the green light to Krystal Biotech's VYJUVEK, a topical gene therapy. Get more info at debra.org
Learn more about the voices in this episode:
• Joe Davis
Email: butterfly@hallieflies.com
Facebook - Hallie Grace, Tiny Butterfly Warrior
Instagram - tinybutterflywarrior
Raise Awareness - In Loving Memory of Hallie Grace Davis (hallieflies.com)
Donate to Heroes for Hallie Grace
Hosted & Produced by Dee Daniels with DeeDanielsMedia
Theme song written and performed by Hallie Grace
Thursday May 25, 2023
Thursday May 25, 2023
In this episode, Cindy Brown of All About You Entertainment joins us to share the heartwarming story of how she and Anne, Hallie Grace’s mother, crossed paths in the most unexpected way. Cindy and Anne unite with Savannah’s community to bring their dream to life—the first annual Butterfly Ball. As they dive headfirst into planning the event, Cindy and Anne discover the true power of teamwork and community spirit. Join them as they navigate challenges, enlist the help of local businesses, and witness the magic that unfolds when a town comes together to make a dream a reality.
UPDATE on NEW EB Treatment
Just days ago, the FDA approved the first official treatment for Dystrophic EB. This is a huge step forward in the EB Community @wefighteb - The FDA has given the green light to Krystal Biotech's VYJUVEK, a topical gene therapy. Get more info at debra.org
Learn more about the voices in this episode:
• Anne Davis
Email: butterfly@hallieflies.com
Facebook - Hallie Grace, Tiny Butterfly Warrior
Instagram - tinybutterflywarrior
Raise Awareness - In Loving Memory of Hallie Grace Davis (hallieflies.com)
Donate to Heroes for Hallie Grace
• Cindy Brown
All About You Entertainment
Instagram - @allaboutyouentertainment
Facebook - AllAboutYouEntertainmentLLC
Pinterest - @allaboutyouentertainment
Hosted & Produced by Dee Daniels with DeeDanielsMedia
Theme song written and performed by Hallie Grace
A Beautiful Soul Who Left an Impact
Hallie Grace was unexpectedly born with Junctional Epidermolysis Bullosa (JEB), which ultimately stole her life at only 3 months of age. JEB is an autosomal recessive disorder that occurs in less than 5% of EB cases. The types of EB differ in the area of the skin or connective tissue where the blistering occurs, so JEB occurs mostly in the basement membrane zone, which is a "junction" between layers. The severity varies considerably across two major subtypes - intermediate and severe, with the latter associated with early lethality in the first 6-24 months of life.Despite everything she endured, Hallie is a beautiful soul, who drew people to her, and she has already made an impact on so many! Before she was born, we knew she was meant to be a "warrior in God's army and a testimony to Him," but we never expected it would be like this. We now know her purpose was to help bring awareness to EB - "the worst disease you've never heard of" - and help make it "the worst disease we found a cure for"!
Her fight is now our fight, so please join us and help raise awareness and funding so no other family or child has to suffer! Thank you!
For more information, please visit www.hallieflies.com.