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
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
Monday May 22, 2023
Monday May 22, 2023
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 fragile, blistering skin. The conversation touches on the power of music and its ability to evoke emotions, raise awareness, and connect people on a profound level.
Join us as we explore their journey of resilience, love, and the importance of spreading awareness about EB. You'll be moved by their story, inspired by Hallie Grace's talent, and gain a deeper understanding of the incredible impact they are making through their collaboration. Don't miss this extraordinary episode filled with hope, music, and the strength of the human spirit.
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
• Hallie Grace
Listen to Tiny Butterfly Warrior
Listen to Butterflies
Follow Hallie on Instagram
Hosted & Produced by Dee Daniels with DeeDanielsMedia
Theme song written and performed by Hallie Grace
Monday May 22, 2023
Monday May 22, 2023
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 strength in the face of unimaginable challenges. Her parents, Anne and Joe Davis, will guide us through their remarkable journey, sharing the highs and lows of their three-month battle with JEB alongside Hallie Grace.
Tune in to the Grace, Grief and Grit Podcast as we embark on a mission to educate, uplift, and amplify the voices of those affected by EB. Together, we can illuminate the challenges faced by these remarkable individuals, honor the memory of Hallie Grace, and work towards a future where no family has to endure the devastating impact of this rare disease alone.
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
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.