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.
Have you met Sohana yet?
Sohana Collins is a 15 year old young girl 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. Here is what Sohana says about her condition:
“Hi, I’m Sohana, and I have a horrible skin condition called Recessive Dystrophic Epidermolysis Bullosa. I try not to let it get in the way of the things I love doing, like drawing, writing and singing, but there are many things that I can’t do because of EB. There are things that you probably take for granted. Life with EB is painful, difficult, and can sometimes consume the good things, making life a daily battle.
It breaks my heart to know that there is so much money being spent on trivial, insignificant things, when there are children who know nothing but pain.
EB has affected every aspect of my life and I constantly fight to keep a smile on my face but often lose. You’ve probably only seen me smiling and happy but very often, now that I’m getting older, I feel more broken and helpless against this condition which, unless people do great things, will take my life. I’m not uncomfortable with saying that, I have acknowledged that that may be true, but I know that there is hope of defeating EB and we are so very close to doing just that.”
EB stinks. That is a fact. And Rare Disease Day is the perfect opportunity to raise awareness for this terrible skin condition!
Yes, we may not be researchers working to find a cure for this terrible skin condition, but we can still help the bravest girl Damian Lewis has ever known and all other butterfly kids out there in our own little ways…
Do it like Damian and join the Butterfly Brunch Club!
You set a date and choose a venue and invite a group of friends or colleagues for brunch. You may either charge your guests for tickets or invite them to make a donation to Cure EB. Sign up here, receive your Butterfly Brunch Pack in the mail and you are all set to have your eggs, sip your mimosas and raise awareness about EB and money for research!
Do it like Damian and Fundraise for Cure EB!
Even if you are not in the UK to be a part of the Butterfly Brunch network, you can still fund-raise in several different ways! Damian has done his share several times taking the trading floor on GFI Charity Day raising money for the Fund.
And yours truly contributed by running a half-marathon and raising almost $6K for the Fund back in 2015.
You think you are not athletic enough for a sports event? You can always play to your own strengths and get creative with it! How about organizing a cook-off, a bake sale, a board game tournament and donate the proceeds to Cure EB? Any sponsored event could help raise EB awareness as well as generate much needed funds for research.
And if you want to donate to Cure EB, but did not get a call from Damian, you can always securely donate at Cure EB’s Donate page 🙂 There is no small gift and every dollar counts! Since the Collins family covers the cost of events, fund-raising as well as the administration services for Sohana Research Fund, 100% of donations individuals make directly go into research projects.
Spread the word!
Please please please spread the word! Visit Cure EB website for more information. Follow them on Twitter and Facebook. Please SHARE the information. And please HELP so we can beat Epidermolysis Bullosa, a disease “Hard to say, Hell to Live with!” together. Thank you!