Do it like Damian Lewis:
POP the Balloons for Cure EB and RAISE Awareness for EB! *UPDATED*

source: Cure EB Facebook Page

First things first.

Same wonderful charity.

Same great mission.

Same brilliant patron.

NEW NAME!

Sohana Research Fund is NOW Cure EB so everyone can find the mission in their 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), a genetic skin blistering condition where the body lacks the protein to hold the skin together.

When I shared the name change information on Twitter, the patron has quoted the tweet and said:

YES, WE WILL!

And while we may not be researchers working on a cure for this terrible and rare genetic 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.

Sohana Collins, source: Cure EB Facebook Page

Cure EB 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. They launched another FUN challenge especially suited for HOT summer days last year… and we cannot be happier that they have revived it again this summer.

Well, how many balloons can you POP for butterfly kids?

Here is the drill directly from Cure EB’s Facebook Page:

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 the Collins family!

You can find many more EB Pop videos on Cure EB’s Facebook Page! And, hey, a certain patron has just shared his EB Pop on Twitter, too! Hats off, Damian, for a brave performance 😀

And now that the patron has done his share and invited all his fans to take part in EB Pop, here is me taking one for the Fan Fun Team 😀

I am grateful to Lewisto and my two dear friends for making this production possible at 100+ Fahrenheit in Central Park, but you know what, everyone was happy getting wet in the end! 🙂 Please please join us, play EB Pop so we can raise awareness and help find a cure for EB. And, hey, you can always print the information below and use it for your own EB Pop!

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!

source: Cure EB Facebook Page
source: Cure EB Twitter
source: Instagram

And while we are thrilled that the research happening at the moment is very promising in finding a cure for EB, we are still not there yet! The clock is ticking and we need more and more research. Thus, donating to Cure EB for research is obviously the most direct way to help and there is no small donation. You can always donate securely to Cure EB here.

source: The Guardian

Please note that 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.

And please please please SPREAD THE WORD!  Check out Cure EB website for more information. Follow Cure EB 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.

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!

2 thoughts on “Do it like Damian Lewis:
POP the Balloons for Cure EB and RAISE Awareness for EB! *UPDATED*”

  1. Hallo liebe Damianista,

    was für ein toller Bericht über Cure EB. Was für eine tolle Familie Sohana doch hat. Diese Videos von der Familie, von Damian und nicht zuletzt auch von Euch Beiden sind einfach toll und mitreißend. Ich muss gestehen, ich bin etwas überfordert, da ich mich ehrlich gesagt noch nie mit der Frage aus einander gesetzt habe, was man evtl. für, einem komplett fremde Menschen in Not, tun kann.
    Ich bewundere Dich dafür, dass Du sogar einen Marathon dafür gelaufen bist und überhaupt diese Sache mit so viel Herz und Engagement unterstützt. Es gibt einfach gute Gründe, warum die einen für eine Vorbildfunktion geboren sind. Du bist so ein Mensch und Dein Lewisto sowieso. Ich finde es so süß, dass er es nicht fertiggebracht hat, Dich zu beschmeissen, sondern lieber nur das Wasser über Dich gekippt hat. Er kann Dir einfach nicht wehtun und möchte Dir nur jeden Wunsch erfüllen. Wenn ich denke, dass er mit Dir diese ganzen Locations abgeklappert hat, habe ich doch richtig übersetzt, oder ?? Der Wahnsinn !!
    Ich bin froh und glücklich über dieses Video von Damian und seinen Kindern. Hammerhart und super lustig. Herzlich und so liebevoll, wie er sie ausschimpft und ihnen ankündigt, dass sie jetzt gleich ärger kriegen. Endlich mal wieder der Damian, den ich total verehre.
    Aber, wenn ich es genau nehme, haben wir auch solche „Helden“ an unsere Seite. Und ich schätze mich jeden Tag glücklich, meinen Mann getroffen zu haben. Und wenn ich Euer Bild vor dem Springbrunnen so anschaue, springt mich da das gleiche Gefühl an. Ihr seid einfach ein tolles Paar.
    Ich bin sehr froh, Deine Seite gefunden zu haben und Grüße Dich und Deinen Lewisto ganz herzlich aus Deutschland.
    Eure Lucky Fellow

    Google-translate:

    Dear Damianista,

    What a great report on Cure EB. What a great family Sohana has. These videos from the family, from Damian and last but not least from you two are just great and rousing. I have to confess, I’m a bit overwhelmed because I’ve honestly never set myself apart with the question of what you possibly can do for, a complete stranger in need.
    I admire you for running a marathon for it and for supporting it with so much heart and dedication. There are simply good reasons why some are born to serve as role models. You are such a person and your Lewisto anyway. I think it’s so cute that he did not manage to shower you, but rather just dumped the water over you. He just can not hurt you and just wants to fulfill your every wish. If I think that he has chopped off with you all these locations, I have translated correctly, right? The madness !!
    I am happy and happy about this video by Damian and his children. Hammer hard and super funny. Sincerely and so lovingly, as he scolds them out and announces that they get worse now. Finally the Damian again, whom I absolutely adore.
    But, if I take it exactly, we also have such “heroes” by our side. And I’m happy every day to have met my husband. And when I look at your image in front of the fountain, the same feeling comes to my mind. You are just a great couple.
    I am very glad to have found your page and greet you and your Lewisto from Germany.
    Your lucky fellow

    1. Awwww, my dear Lucky Fellow, thank you so much for your very kind words! I have felt the same when I got your picture for your fan story. I see the love in your eyes! <3 I feel very lucky to have met you, too! Please keep greeting us from Germany.

      Sohana has an amazing family. I met them three years ago. They are dedicated to all their children but of course Sohana gets special attention. She is a true inspiration. I only saw her for a couple of hours but it is enough to understand how a lot of things we take for granted in life is a challenge for her. What a beautiful, bright and brave girl! And her mom, Sharmila, is a true real-life hero! And I believe they, oh no, we WILL find a cure...! By the way, yes, Lewisto has a beautiful heart, and oh yes he plays ball with me in every crazy endeavor of mine, but he is simply not as good a shooter as Gully and Manon. They have to teach him! 🙂

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