The Hallie Grace Memorial Butterfly Ball for EB

The Hallie Grace Memorial Butterfly Ball for EB will take place on June 10, 2022 from 6-10pm at beautiful Savannah Station in celebration of what would have been our sweet angel Hallie Grace's first birthday. Hallie Grace Davis was born June 5, 2021 with an unforeseen and very cruel genetic condition called Epidermolysis Bullosa (EB). Hallie unfortunately had the most rare and severe type, Junctional EB, which is terminal in most cases. Hallie was a true warrior and inspiration to many, but she won her battle and flew Home on September 8 of the same year at only 3 months, 3 days old.

Hallie's fight became our's, as it is VITAL to find treatments and an eventual cure to EB, which is known as "the worst disease you've never heard of." EB robs children and their families of the future they deserve and can cause excruciating pain. Hallie Grace is our Tiny Butterfly Warrior Angel now, but so many others are still fighting. EB is caused by a single genetic mutation that prevents the body from creating a necessary protein to hold the skin together. Therefore, the skin becomes so fragile that it blisters and tears with any friction. Children with EB are known as Butterfly Babies, as their skin is as beautiful and fragile as a butterfly's wings.

We created our nonprofit Heroes for Hallie Grace Inc. in her memory. Our mission is now focused on raising awareness, funding important research, and improving quality of life for individuals and their families impacted by EB. We expect to see real change in our lifetime in Hallie's memory, as a cure for EB is expected in the next decade, and could also cure over 7000 other single mutation genetic conditions. That would be a positive impact on over 10% of the population!

With donations from many generous local vendors, we expect quite an amazing night full of fun, education, and fundraising! The event will include a live butterfly release, delicious heavy hors d'oeurves, a presentation from our daughter's doctor at MUSC about why the fight against EB is so important, a live band from Nashville, DJ and dancing, a photo booth, a silent auction, and much more! 100% of the proceeds will go towards the fight against this diabolical condition! We would be honored if you would help us build Hallie's legacy and join her fight!

We would like to thank our wonderful vendors :

• Dr. Lara Wine Lee of MUSC

We would also like to thank our amazing sponsors:

Pink Ladies:

• Tonya Clauss & Nick Parnell

Event Venue & Nearby Stays

Savannah Station, 601 Cohen Street, Savannah, United States