Sohana Research Fund is NOW Cure EB so everyone can find the mission in their name. They are determined more than ever 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.
Vanity Fair: “Which living person do you most admire?”
Damian Lewis: “Sohana Collins. A little girl I know who’s extremely brave.
Do you want to HELP the bravest girl Damian has ever known?
Sohana Collins, who gives her name to Sohana Research Fund, is a 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 “POP the Balloons for Sohana Research Fund and RAISE Awareness for EB!”