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