Please visit our website sophiasEBhope.org to learn more about Sophia’s brave and inspiring life story.
Our beautiful daughter, Sophia, was born with Junctional Epidermolysis Bullosa GS, which is considered terminal in early childhood. Epidermolysis Bullosa is a rare genetic disorder that causes a person's skin to be extremely fragile. Skin is easily torn and blistered, leaving burn-like wounds over much of the body and leaving a person vulnerable to infection. Internal tears, swelling and scarring can be devastating for those with the severe forms of EB. Sophia battled EB for a little over a year - fighting all her pain and suffering with incredible smiles, laughter, and sweetness. Still, EB took too much from her little body, and Sophia's pain finally ended when she went to Heaven just a few weeks after her first birthday. We continue fighting EB each day in her memory - we know it is Sophia's Hope to see an end to EB and all the suffering it causes. New research in the area of gene therapy is very promising, and with much needed funding we may finally see an end to all the suffering. Please donate today to help find a cure.
More information about EB Research Partnership: EB Research Partnership (EBRP) is the largest 501(c)(3) nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa, a group of devastating and life-threatening skin disorders that affect children from birth. EB Research Partnership works to treat and cure EB as quickly and efficiently as possible and fulfills their mission by partnering with non-profit and for-profit organizations, foundations, individual donors, and the EB and research communities.
Thank you to those who donate, share this fundraiser, or spread awareness about EB. You are making such a difference in the lives of so many rare, beautiful, and brave children and adults facing EB each and every day.