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The Grace, Grief and Grit Podcast

Education Podcasts

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.

Location:

United States

Description:

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.

Language:

English


Episodes
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THIS is what a Support Team looks like! Life Grows Around the Grief: Parents Holding Space for Parents

4/29/2024
"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

Duration:01:17:50

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Looking Back and Looking Foward with Epidermolysis Bullosa | ft. Dr. Peter Marinkovich

3/28/2024
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

Duration:00:59:27

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A New Season: Lasting Legacy, Inspiring Impact!

3/26/2024
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

Duration:00:49:40

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Kids Grief Support, ft. Child Life Specialist Jessica Correnti

2/22/2024
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

Duration:00:53:42

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Savannah Ghost Pirates - EB Awareness Night is COMING!!

2/12/2024
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

Duration:00:11:23

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Siblings of EB - The Faces and Hearts of True Support

1/18/2024
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

Duration:00:56:49

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Meeting the Heroes Building Therapies for Genetic Diseases

1/11/2024
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

Duration:00:46:14

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Perfection of Imperfection | ft. Hodges R. Caldwell, Jr.

1/4/2024
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

Duration:01:16:05

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Wind to Fly Higher

12/14/2023
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

Duration:00:24:53

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The Journey of Hope and Connection

12/7/2023
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

Duration:00:38:55

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The Mom Episode

10/27/2023
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

Duration:00:55:24

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The Dad Episode

6/7/2023
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

Duration:00:56:34

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Once Upon a Ball with Cindy Brown

5/25/2023
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

Duration:00:31:31

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The Day Hallie Grace Met Hallie Grace

5/22/2023
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

Duration:00:42:09

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Hallie Grace’s Story: The Journey of Love, Hope, and Resilience

5/22/2023
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

Duration:00:55:34