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 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 EB Awareness Week 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… Believe me, there are many ways to help – JUST PICK ONE!
Do it like Damian and Fundraise / Donate to Cure EB!
We know Damian has done his share every year on the trading floor to raise money for the Fund on BGC Charity Day.
And for those of us that cannot raise funds on the trading floor, there are many other ways to do so!
Sharmila, Sohana’s mother and the true hero behind Cure EB, ran not one, not two, not three, but 17 marathons in London to raise awareness about EB and funds for EB research!
Here’s Damian supporting Sharmila’s super human efforts when she ran her 12th marathon, London Marathon itself to be precise, in October 2021.
“I am extremely proud to be a patron of CureEB. The pain Sohana has to live with daily is unimaginable. Her condition will worsen and we now have a race against the clock to find and fund effective treatment. Sharmila is incredibly driven and relentlessly focused on improving not only her daughter’s life but also those of other children with this terrible condition. She has raised millions of pounds for research into EB, at times single-handedly. It’s hard enough to run one marathon but 12 in a year is extraordinary, particularly when Sharmila works so hard every day to find a cure for EB. I am in awe of her. Please sponsor Sharmila and help change the lives of these children and young people.”
And it was a very happy day when I ran a half-marathon and raised almost $6K back in 2015 for the fund.
And you do not need to run a marathon or a half-marathon, you do not even need to participate in an organized event. Tiffany, who had registered for a 5K, was not able to make it due to health reasons, and did her 5K later on her own and fund-raised for the fund.
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, 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. While the first large-scale stem cell clinical trial for children with EB has started, we are still not there yet. The clock is ticking and we need more and more research. Thus, donating to the fund is obviously the most direct way to help and there is no small donation.
Since the Collins family covers the cost of events, fund-raising as well as the administration services for Cure EB, 100% of donations individuals make directly go into research projects. If you want to donate to Cure EB, but did not get a phone call from Damian, you can always securely donate at Cure EB’s Donate page 🙂
Do it like Damian and Get a Copy of Binky’s Time to Fly
“When Binky turns from caterpillar to butterfly, it’s a disaster! His wings won’t work and poor Binky can’t fly. Luckily, the spiders, silkworms and bees come to his aid. Together they work out how to give Binky a pair of bright, strong wings.”
Written by Sharmila Collins and illustrated by Carolina Rabel, Binky’s Time to Fly is a wonderful children’s book about empathy, hope, inclusion and helping others.
Get yourself a copy of Binky’s Time To Fly during EB Awareness Week! All proceeds go to Cure EB! You can buy a hardback copy on Cure EB website or a paperback copy on Amazon.
Do it like Damian and Spread the word!
Here is Damian sending a heartfelt message and raising EB awareness on behalf of Cure EB on BGC Charity Day in 2020.
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!