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Damian Raises Awareness for CureEB – June 26, 2018

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Damian’s Children Throw Water Balloons at Him for ‘EB Pop, Make the Blisters Stop’ Campaign

by Damianista | Fan Fun with Damian Lewis | June 26, 2018

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. The 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 Sohana and her parents, Sharmila and James!

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, 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 the Fan Fun Team. I am grateful to Lewisto and my two dear friends to make this production possible at 100+ degrees in Central Park but you know what, everyone was happy getting wet in the end!

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.

Read the rest of the original article at Fan Fun with Damian Lewis

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Fund-raise for Cure EB!

Cure EB is currently looking for team members that will join them in running the Virgin Sport British 10K in London on July 15, Sohana’s birthday. Please email them at contact@cure-eb.org if you are interested in running to raise awareness for EB!

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