First things first.
Same wonderful charity.
Same great mission.
Same brilliant patron.
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:
Because we WILL find a cure….! https://t.co/KAyl9uuHNK
— Damian Lewis (@lewis_damian) April 17, 2018
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.
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!
— Cure EB (@CureEBorg) June 23, 2018
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 😀
— Damian Lewis (@lewis_damian) June 25, 2018
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!
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.
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.