Countdown to the 4th Annual Hallie Grace Memorial Butterfly Ball for EB

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.

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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.

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