Butterfly Brunch Club – Page 2 – Fan Fun with Damian Lewis

Do it like Damian Lewis and Raise Awareness for EB!

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:

Because we WILL find a cure….! https://t.co/KAyl9uuHNK
— Damian Lewis (@lewis_damian) April 17, 2018

Continue reading “Do it like Damian Lewis and Raise Awareness for EB!”

Let’s Raise Awareness for EB on Rare Disease Day!

Damian Lewis answers the Vanity Fair Proust Questionnaire.

Vanity Fair: “Which living person do you most admire?”
Damian Lewis: “Sohana Collins. A little girl I know who’s extremely brave.

Sohana Collins is a young teenager who was born with RDEB, a rare disease, meaning 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. Besides, they are under extra risk to develop skin cancer later in life and their life expectancy is not very long. That is why Sohana’s parents Sharmila and James Collins founded Sohana Research Fund to raise awareness as well as funds for research to ultimately have a cure for this terrible skin condition. Continue reading “Let’s Raise Awareness for EB on Rare Disease Day!”