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.'

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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.

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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.

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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

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.

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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.

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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).

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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).

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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