The Grace, Grief and Grit Podcast

In this heartfelt episode of the 'Grace, Grief, and Grit' podcast, producer Dee Daniels joins Anne and Joe Davis as they prepare for the fourth annual Hallie Grace Memorial Butterfly Ball for EB. Anne and Joe discuss their journey with Heroes for Hallie Grace, their nonprofit organization founded in memory of their daughter, Hallie Grace. --- They talk about the impactful initiatives they have launched, including the Butterfly Bundle Welcome Boxes, Wings of Care, and the Forever in Flight Memorial Boxes, emphasizing the personalized care and support provided to families affected by EB. The episode also highlights the upcoming ball's new venue at the Morris Center, the planning that goes into the event, and the excitement surrounding the community's participation and contributions. Listeners are encouraged to support the cause and experience the inspiring stories of families within the EB community. GRAB YOUR TICKETS TO THE BALL HERE We are officially a 501(c)(3) organization, and our Mission is three-fold: 1. Raise Awareness 2. Fund vital research and 3. Aid children with EB and their families in any way we can. We take in donations for the following purposes: Put on Fundraisers or other Events to further support our cause and raise awareness Partner with and donate to other well-known EB-related foundations and medical professionals/researchers working hard to support EB families and find treatments/an eventual cure Send free, customized "Butterfly Bundle" Welcome Boxes to support new EB families with bamboo clothing, special blankets, self-care and family-building items, books, and resources/support for all members of the family, including siblings Meeting the needs of individuals and their families still living with EB by filling any gaps with our "Wings of Care" initiative (examples include providing emotional support, finding resources, or providing much needed medical supplies, special clothing, equipment, etc. depending on what the individual or family needs in that moment) Support families that have lost a loved one to EB with free, specially curated "Forever in Flight" Memorial Boxes, resources in their area, and ongoing support as well Work with the EB Community as a whole to develop educational materials for doctors and families based on patient/family experiences to help make navigating EB at least somewhat easier for everyone involved and presenting these materials at conferences and other related events to reach as many people as possible. LEARN MORE AND HELP IN THE FIGHT

In this poignant episode of the Grace, Grief, and Grit podcast, hosts Dee Daniels and Joe Davis engage in a heartfelt conversation with Krista Isaacson, a wife, mother of six, and author of 'Unbearable Burden.' --- Krista shares the devastating experience of losing her daughter Elora to a cancerous brain tumor and the emotional journey that followed. Through vivid storytelling, Krista recounts moments from Elora's life, the sudden discovery of her illness, and the difficult decision to remove her from life support. The discussion also touches on Krista's subsequent pregnancy, the healing process, and the impact of Elora's memory on her family. This episode is a profound exploration of love, loss, and the enduring strength of a grieving mother. Learn more about EB and the voices in this episode: MEET Krista Isaacson READ 'Unbearable Burden' Tap HERE to become a HALLIE HERO Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media: Podcast Production, High-Quality Editing, Content Coaching, and Show Promotion

In this episode of the Grace, Grief and Grit podcast, producer Dee Daniels and host Anne Davis welcome their special guest, Ariana Covarrubias. Ariana, a 25-year-old from Los Angeles living with Recessive Dystrophic Epidermolysis Bullosa (EB), shares her inspiring journey of resilience and authenticity. She discusses the challenges and personal growth stemming from her condition, the importance of mental health and vulnerability, and her passion for makeup and content creation. Ariana's story is a powerful testament to the strength of the human spirit and the impact of sharing one's true self. Listeners will find valuable insights into living with a rare condition, the evolution of resources and community support, and the significance of open conversations about difficult topics. Learn more about EB and the voices in this episode: MEET Ariana Covarrubias Reclaiming Beauty: Ariana Covarrubias and the ONE/SIZE Campaign SUBSCRIBE and MEET Ariana on YouTube Tap HERE to become a HALLIE HERO Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

In this episode of the Grace Grief and Grit podcast, hosts Dee Daniels and Anne Davis talk with Marianne Ganem Poppell, owner of Savannah Master Calendar and local business advocate, about the importance of connections and community. --- The conversation highlights Marianne's diverse roles in supporting local businesses and nonprofits, including her work with Savannah Master Calendar, Simply Savannah Marketing, and various local boards. They discuss the successful 'Sips at the Station' networking events at Ardsley Station, benefiting different nonprofits monthly. --- The episode also covers the upcoming events, including a Sips at the Station night on March 18th benefiting Heroes for Hallie Grace, and plans for further community engagement. Learn more about EB and the voices in this episode: Meet Marianne & Savannah Master Calendar Tap HERE to become a HALLIE HERO Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

Welcome to the Grace, Grief and Grit Podcast Season 2 Finale. Join host Dee Daniels as she sits down for an emotional and inspiring conversation with Joe Davis, a father who has bravely shared his journey of losing a child. --- In this reflective episode, Joe opens up about the progress he's made since his last appearance, his struggles with vulnerability, dealing with triggers and grief, and the complexities of maintaining his faith. Joe also discusses the importance of being a vulnerable sounding board for others, the difficult balance of recalling certain memories as time goes on, and the hopeful advancements in EB research. --- This episode honors the strength and resilience it takes to navigate life's most profound losses while still finding moments of connection and joy. Thank you for listening! Please rate and review this podcast - and share the episode with others to help spread awareness of the continuous work to find a cure for EB. Learn more about EB and the voices in this episode: Tap HERE to become a HALLIE HERO Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

In this episode of the Grace Grief and Grit podcast, producer Dee Daniels interviews Anne and Joe Davis about their impactful trip to Los Angeles for the Rock4EB event. --- They discuss the significance of the event, designed to raise awareness and funds for Epidermolysis Bullosa (EB), and their personal experiences meeting notable celebrities like Brad Pitt and Courteney Cox. --- The Davises share stories of kindness and generosity from the attendees, the emotional connections made, and the impressive sum of over a million dollars raised for EB research. They reflect on the importance of unity among EB organizations and how events like these inspire further growth and collaboration. Thank you for listening! Learn more about EB and the voices in this episode: Learn more about EBMRF Tap HERE to become a HALLIE HERO Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

Welcome to the 'Grace, Grief and Grit' Podcast! In this episode, producer Dee Daniels and co-host Joe Davis welcome a very special guest - educator and author, Dennis Vanasse. Dennis shares his journey of writing inclusive children's books, focusing especially on his book 'Everyone Belongs' which discusses Epidermolysis Bullosa (EB). --- The conversation delves into Dennis's inspiration, the impact of his work, and the importance of acceptance and awareness in education. Dennis's background in special education and his personal experiences shape a compelling narrative around inclusivity and understanding. The episode also highlights advancements in EB treatments and the ongoing efforts to foster a supportive community for individuals with EB. Thank you for listening! Learn more about EB and the voices in this episode: Find Dennis on Instagram Tap HERE to see all of Deniss Vanasse's books Tap HERE to become a HALLIE HERO Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

In this special episode of the Grace Grief and Grit podcast, producer Dee Daniels hosts a full house featuring Jenny Brewster, Tyler Cobb, and Megan Mason, all board members of Heroes for Hallie Grace. The group shares personal stories about how they became involved with the nonprofit and discusses the crucial mission of supporting families affected by Epidermolysis Bullosa (EB). --- They highlight various ways the community can contribute, including becoming a Hallie's Hero through monthly donations, participating in the annual Butterfly Ball, and supporting the organization's fundraising efforts. The episode emphasizes the importance of Giving Tuesday and aims to inspire listeners to donate and assist in the fight against EB. Key actions include visiting the website HallieFlies.com, following Tiny Butterfly Warrior on social media, and spreading the word about the organization's impactful work. Thank you for listening! Learn more about EB and the voices in this episode: Tap HERE to become a HALLIE HERO Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

In this episode of the 'Grace, Grief and Grit' podcast, hosts Dee Daniels and Ann Davis welcome special guest Desiree Sparrow, an integrative health therapist, yoga instructor, and minister - who also works at a Children's Hospital in Philadelphia. --- Desiree shares her journey into integrative health, driven by her personal history with anxiety and trauma. The conversation delves into the importance of mindfulness, meditation, and yoga as tools for managing stress, medical conditions, and rare diseases. Desiree discusses practical techniques such as sensory anchoring and the RAIN method to help caregivers and patients regulate their nervous systems. She also emphasizes the significance of self-care and self-love, breaking down the misconceptions about yoga and mindfulness practices. --- This episode provides valuable insights and practical advice for anyone seeking to incorporate these practices into their daily lives to improve mental and physical well-being. Thank you for listening! Learn more about EB and the voices in this episode: Tap HERE to connect with Desiree Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

In this episode of the Grace Grief and Grit podcast, hosts Dee Daniels and Ann and Joe Davis sit down with Michael Hund, the CEO of EB Research Partnership (EBRP). --- Michael shares the mission of EBRP, which is the largest global organization dedicated to treating and curing epidermolysis bullosa (EB). They discuss Michael's journey in joining EBRP in 2017, the learning experiences along the way, and the transformative impact of his work. --- Michael emphasizes the importance of hope in the EB community and highlights the broad range of ongoing research projects aimed at treating various subtypes of EB. The conversation wraps up with a call to action for listeners to get involved and support the EB community in any way they can. Thank you for listening! Learn more about EB and the voices in this episode: Meet Michael Hund and LEARN MORE about EBRP Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

Meet Lyle Dillie! For dependable photography and videography services that offer quality outcomes with professionalism and attention to detail, your search ends here. We're so thankful to Lyle for providing top-notch videography services for the 3rd Annual Hallie Grace Memorial Ball for EB. Lyle's expertise lies in Portrait, Nature, and Commercial Photography. He strives to create a comfortable atmosphere to naturally capture people's interactions. Additionally, he is passionate about nature photography, aiming to encapsulate Georgia's scenic beauty during each of the four seasons. Thank you for listening! Learn more about EB and the voices in this episode: Meet Lyle Dillie Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

Anne and Joe Davis are here to celebrate the success of the 3rd Annual Hallie Grace Memorial Ball for EB! First - a BIG THANK YOU to all who were able to attend, volunteer, or support in any way. We did reach our financial support goals for the ball!! Secondly, we continue to evolve and grow as an organization. This year we saw firsthand our vision of "more connection" come to the surface. Hallie Grace Davis is a beautiful soul that continues to create an impact on our world - and certainly within the EB community. It's not too early for you to be a part of the next ball, as well as help fund the important research that is going on right now for more treatments and a cure. Thank you for listening! Learn more about EB and the voices in this episode: Tap HERE to connect with Hallie's Story EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

Nicholas A. Christakis, MD, PhD, MPH, professor at Yale University, is a sociologist and physician who conducts research in the areas of social networks and biosocial science. He directs the Human Nature Lab. The author of four books and over 200 articles, Christakis was elected to the Institute of Medicine of the National Academy of Sciences in 2006 and was made a Fellow of the American Association for the Advancement of Science in 2010 and a Fellow of the American Academy of Arts and Sciences in 2017. On this episode we are talking to Nicholas about his book, "BLUEPRINT: The Evolutionary Origins of a Good Society". In Blueprint, he introduces the compelling idea that our genes affect not only our bodies and behaviors, but also the ways in which we make societies, ones that are surprisingly similar worldwide. He brings some impactful questions related to grief to the table, like: Why do we have this capacity for grief? Why is it helpful for us as humans to have the experience of the emotions around grief? "Emotions are a very primitive form of communication that far preceded our capacity for language - it's a more sophisticated type of communication." Thank you for listening! Learn more about EB and the voices in this episode: Meet Dr. Nicholas Christakis Learn more about the book "Blueprint: The Evolutionary Origins of a Good Society" EB in depth Meet the family behind Heroes for Hallie Grace Donate and Join the Fight Proudly hosted and produced by Dee Daniels Media

"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 Tap here to GIVE a DONATION