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. 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.
EB stinks. That is a fact. And we believe that the time Damian makes for Cure EB is always a TOP Damian Lewis moment of the year!
First things first.
Same wonderful charity.
Same great mission.
Same brilliant patron.
Sohana Research Fund has changed its name to Cure EB earlier this year so everyone can find the mission in the 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).
And when I shared the name change information on Twitter, 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
YES, WE WILL!
Cure EB officially presented their new name at a meeting in the House of Lords in May. The event saw researchers Professor McGrath and Professor Hovnanian talk about the frontier research and new clinical treatments, and charity patron Damian Lewis point out the urgency to raise awareness and funds for a world without EB!
Cure EB came up with several FUN campaigns in the last couple of years varying from “EB Tongue Twister” challenge to “Stick out Your Tongue at EB” to raise awareness about the disease. And they launched another FUN challenge especially suited for HOT summer days…
Well, how many balloons can you POP for butterfly kids?
Here is the drill directly from the fund’s Facebook Page:
You can find many more EB Pop videos on Cure EB’s Facebook Page! And, hey, a certain patron shared his own EB Pop on Twitter, too! Hats off, Damian, for a brave performance 😀 And, Manon and Gulliver, good job!
— Damian Lewis (@lewis_damian) June 25, 2018
Finally, Damian was on trading floor on GFI Charity Day in September representing Cure EB to help raise funds to find a cure for Epidermolysis Bullosa. And he sounds very confident about his trading skills!
“Axe is gonna bring some insider info to the floor to really crank those trades.”
Here is two short videos of Damian the trader!
This guy seems to know what he is doing, doesn’t he? And, hey, if Bobby Axelrod cannot do this, who can, huh? 🙂
Still, a little help from young friends never hurts! 😀
You can see more pictures and videos from GFI charity day on our gallery.
While we may not be researchers working to find a cure for this terrible skin condition, 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 Sohana Research Fund. 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!
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! For example, I ran a half-marathon and raised almost $6K for Sohana Research Fund in 2015. Here is the patron blessing my jersey a few weeks before the race at New Yorker Festival.
And if 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, or 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 the fund’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!
Check out 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!