Tag: Charity

You all know by now Damian Lewis is a proud patron of Sohana Research Fund.

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 “Do It Like Damian Lewis: Stick Out Your Tongue at EB!”

We’re past EB Awareness week, but why not make every week EB week? Because it’s time to spread the word about Sohana Research Fund, a small charity working extremely hard to spread awareness and raise funds for research to find a cure for Recessive Dystrophic Epidermolysis Bullosa (RDEB) “Hard to Say, Hell to Live with.”

Sohana is a young teenager who was born with RDEB which means she lacks the protein that holds her skin together. Kids with RDEB 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 “Make every week EB Week! There are many ways to HELP Sohana Research Fund – Pick One!”