You all know Damian is the proud patron of Cure EB (formerly Sohana Research Fund), a wonderful charity that works very hard to raise awareness and funds to make the world a better place for everyone living with Epidermolysis Bullosa (EB), a genetic skin blistering condition where the body lacks the protein to hold the skin together.
When we shared the name change information on Twitter a few months ago, the patron has quoted the tweet and said:
Sohana Collins is a young teenager who was born with recessive dystrophic epidermolysis bullosa (RDEB or EB) which means she lacks the protein that holds her skin together. Kids with EB have extremely fragile skin that they are sometimes called “butterfly children.” Lots of activities we take for granted as easy routines in our daily lives are a struggle for them. Can you imagine a day where your dressing up takes up to two hours and eating and drinking cause blisters in your mouth and throat? These kids have to deal with this kind of pain every single day. Continue reading “Let’s Give a Hand to Sohana Research Fund for a World without EB!”