POP the Balloons for Sohana Research Fund and RAISE Awareness for EB!

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.

Do you want to HELP the bravest girl Damian has ever known?

Sohana Collins, who gives her name to Sohana Research Fund, is a 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.

source: Sohana Research Fund

I am old enough to know life is not fair, but I will never be able to come to terms with the fact that awful conditions happen to children. EB is a VERY serious condition. There is good research being done, and it is the only way to have a world without EB. That is why we need more research and need it NOW.

While we may not be researchers working on 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. The fund has come 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 Butterfly Brunch Club to raise awareness about the disease. And… now they have launched another FUN challenge especially suited for HOT summer days!

Well, how many balloons can you pop for Sohana?

Here is the drill directly from the fund’s Facebook Page:

source: Sohana Research Fund

“Sohana and EB kids have painful blisters popped daily – how many water balloons can you pop in support? Take the hit for EB!

FILM “I am doing EBpop for the Sohana Research Fund to make the blisters stop. I challenge…. (3-5 friends) to do it in 48 hrs!”

TEXT to add to your post which you can copy and paste from here. “I am doing EBpop for the Sohana Research Fund to make the blisters stop. Text POP to 70300 to give £3 or visit sohanaresearchfund.org #EBPop #CureEB #EBAwareness

GET a friend to throw water balloons at you, fill a paddling pool with balloons and pop as many as you can in 10 secs. Challenge a friend to a balloon popping race. Tag us. Have fun and thank you!”

If you want to find out more about how to take part in EB Pop please see it in practice in this fun and very informative video made by Sohana and her parents, Sharmila and James!

You can see many more EB Pop videos on the Fund’s Facebook page. And as we cannot wait for a certain patron to pop the balloons, we would love to invite all Damian Lewis fans to play EB Pop! Please don’t be shy, we are among friends here… And to lead by example, here is me taking one for Fan Fun Team 😀  Our little family production with film credits going to my mom and water bomb credits going to Lewisto is worth seeing! You will not believe how ruthless Lewisto could get with me! 😀

Sohana Research Fund works extremely hard to raise awareness for the disease and also to raise funds for research. They 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 present physically at the dinner because he was on stage giving an acting feast in The Goat. But he was all over the place in spirit thanks to there 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 but not for online auction in which one could bid from anywhere in the world. Feel me? Yeah, 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, Krista!

Finally, there was a last minute auction item Krista found out about and let me know: A Homeland poster kindly donated by Damian Lewis! Well, yo know me, don’t you? Just say Brody and I am there! I did not even know what poster it was as I bid on it from my living room in New York and I can tell you we had some bidding wars! It turns out when you participate in the oauction, 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!!!! 😀

And one person who could not believe I won the Homeland poster in the auction was Damian himself! Because he did not know one could sit in her living room in the US and bid in an auction taking place in London. It turns out he has posters for all three seasons and lets me choose! But I choose to let him choose for me because it is more fun this way: I suspect it will be Season 3 — as you can imagine, it is my least favorite of the three, but it seems Damian thinks it is the best poster since it has all three signatures on it! Well, I will report back whenever I get my poster. Which one is YOUR favorite?

Now, I completely understand some are too shy to participate in fun challenges and many cannot afford to participate in auctions but there is no small gift and every penny counts! You can always securely donate at Sohana Research Fund’s Just Giving page. And since Sohana’s family covers the cost of events, fund-raising as well as the administration services, 100% of donations individuals make to the fund directly go into research projects.

And, above all, you can always SPREAD THE WORD and please do so! Check out Sohana Research Fund Website for more information. Follow them on Twitter and Facebook. Sohana has just turned 15 on July 15 and all she wants, like all other EB kids out there, is a cure for EB. Please watch this video, share it with others and BELIEVE we can help find a cure for EB together! Let’s “give her the strength to fly.” Thank you <3

Author: Damianista

Academic, Traveler, Blogger, Runner, Theatre Lover, Wine Snob, Part-time New Yorker, and Walking Damian Lewis Encyclopedia :D Procrastinated about a fan's diary on Damian Lewis for a while and the rest is history!

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