TOP Damian Lewis Moments 2017:
Sohana Research Fund

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, who gives her name to Sohana Research Fund, 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.

All Sohana wants, like all other EB kids out there, for Christmas, is a cure for EB. Please watch this video, share it with others and BELIEVE that we can help find a cure for EB together!

EB stinks. That is a fact. And we believe that the time Damian makes for Sohana Research Fund is always a TOP Damian Lewis moment of the year!

Sohana Research Fund had its “Bond with Research” event at the Bond-in-Action exhibition at London Film Museum on February 28, 2017, Rare Disease Day. The event featured researchers as well as a very Bond-looking patron talk about the latest research developments and hopes about finding a cure for EB.

The fund held their biennial Silver Butterfly dinner, an evening of fundraising and entertainment, including a silent auction, at Royal Institute of British Architects in London on May 18, 2017.

The patron was not physically there because he was on stage giving an acting feast in The Goat. But he was all over the place in spirit thanks to several Damian-related auction items to raise funds!

Let’s start with the big one.

Now, I have no idea about the final bid to have that privilege… What I know is that I am sort of relieved this item was available only for LIVE auction at dinner in London but not for online auction in which one could bid from anywhere in the world. Feel me? Yeah, I could have bid all my money and gone bankrupt! 😀 😀 😀

The second item was a wonderful art piece, this wonderful portrait of Damian by Debbi Clark Photography after his performance in American Buffalo in 2015.

Well, I know someone who bid competitively for this one. She may not have had got it in the end, but she definitely made sure the bid go higher and higher for this very good cause. Hats off, Gingersnap!

Finally, there was a last minute auction item Gingersnap found out about and let me know: A Homeland poster kindly donated by Damian Lewis! Well, you know me, don’t you? Just say Brody and I am there! I did not even know what poster it was when I bid on it from my living room in New York and I can tell you we had some bidding wars! And it turns out when you participate in the auction, your name appears on big screens at dinner. A very lovely friend whom I met on Facebook through Sharmila, Sohana’s mom, told me she got excited to see my name on screens and was wondering if I won. Well…

I DID!!!! 😀

One person who could not believe I won the Homeland poster in the auction was Damian himself when I told him at The Goat stage door a week or so after the auction. Because he did not know one could sit in her living room in the US and bid in an auction taking place in London. And he told me he had posters for all three seasons and let me choose! But I told him to choose for me because it would be more fun this way.

Can you guess which poster I got?

Well, I have no idea if Damian remembered our conversation about the poster at The Goat stage door, but I cannot thank him enough for choosing to give me my favorite season. Brody now lives in my study 🙂

source: Damianista

Finally, Damian was on trading floor on GFI Charity Day in September representing Sohana Research Fund to help raise funds to find a cure for Epidermolysis Bullosa.

Here is a short video of Damian the trader from Sohana Research Fund Facebook Page. Well, our guy seems to know what he is doing, doesn’t he? We hope Damian has been able to raise tons of money for EB research today. And, hey, if Bobby Axelrod cannot do this, who can, huh? 🙂

And being a boy all over again for a few minutes did not hurt at all. How fun!

source: Sohana Research Fund

So 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. And Sohana Research Fund has come up with a new FUN idea to raise awareness about EB and funds for research.

Welcome to the Butterfly Brunch Club!

source: Sohana Research Fund

Here is the drill:

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!

Or if you want to donate to Sohana Research Fund, but did not get a call from Damian, you can always securely donate at the fund’s Just Giving 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.

And please please please SPREAD THE WORD!  Check out Sohana Research Fund Website for more information. Follow them on Twitter and Facebook. Please SHARE the information. Please HELP so we can beat Epidermolysis Bullosa, a disease “Hard to say, Hell to Live with!” together. Thank you <3

2 thoughts on “TOP Damian Lewis Moments 2017:
Sohana Research Fund”

  1. Lovely post. I have to say it brightened my day. It’s a terrible disease really. I myself hate being sick on any account, hate needles, and being sick is like my end of the world. So I cannot even begin to imagine what is like to live in permanent pain. I got to know Sohana thru you and Damian. Though I have donated money online because being far away there’s not much you can do. I have raised awareness amongst friends and acquaintances. As you once told me people are more likely to donate to causes they know.

    Loved your story, the bid and your posters
    Keep it up!

    1. Thank you, Eli! I found Sohana Research Fund through Damian but my connection to them is now very personal. I am proud to call Sharmila, Sohana’s mom, a friend, and well, she is absolutely my hero. One of the strongest woman I have ever known, Sharmila founded the fund with her husband, she made all the connections, she traveled from conference to conference to learn about the latest developments in research. Since she and James, her husband, cover all the administrative costs, 100% of the money donated to the fund goes into research. You probably read about the young Syrian boy whose skin has now 90% been renewed thanks to new technology and experimental treatments. There is still a long way to go for a complete cure for EB but the latest developments are very promising! Thank you so much for raising awareness in your circles and donating to the fund. And thanks for all your support and encouragement, we will keep it up! 🙂

Leave a Reply