You all know by now Damian Lewis is a proud patron of Sohana Research Fund.
Sohana Collins 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.
I am old enough to know that life is not fair, but I still cannot come to terms with the fact that such awful conditions happen to children. EB is a serious condition. There is good research being done, and it is the only thing that can do the magic to have a world without EB. That’s why we need more research and need it NOW. The clock is ticking and we should ACT immediately to raise more awareness and funds to help find a cure for EB.
Sohana is becoming 14 on July 15th and all she wants for her birthday, like all other EB kids out there, is a cure for EB. So why not join Sohana Research Fund’s NEW campaign and Stick Out Your Tongue at EB? Like the wonderful Collins sisters giving a hand to their big sister in kicking off the campaign!
And, here’s the proud patron sticking out his tongue, too, at EB!
Since I am a big believer of example being better than precept: I IMAGINE a world without EB and stick out my tongue at EB!
Happy Birthday my young and very brave friend Sohana! I know we can beat EB together!
And here’s our own Holliedazzle (notice the pretty red head!) who has mobilized her fellow participants at CVG2016 to stick out their tongues at EB! Way to go, you all!
And we would love to invite all Damian Lewis fans today to join in the “Stick Out Your Tongue at EB (because EB kids cannot)” campaign! Let’s collect as many tongues as possible for Sohana’s Birthday.
It is EASY. It is FUN. It will help raise AWARENESS about this awful skin condition. Here is what you need to do!
Please follow Sohana Research Fund at @SohanaResearchF on Twitter and visit and like their Facebook Page. See the fund’s yearly newsletter here, get informed about the latest research and please share the information.
See Sohana, the inspiring young lady that she is, speaking at WE Day at Wembley Stadium to raise awareness for a cure for EB below. Please HELP the bravest girl Damian Lewis has ever known and all butterfly kids out there to beat Epidermolysis Bullosa, a disease “Hard to say, Hell to Live with!”
My fellow convention-goers were absolutely heartbroken to hear about EB and the butterfly children. Without Damian bringing attention to this condition, I would have never known about it! Celebrities who use their platform to raise awareness and do good are always my favorite. Cheers to the tall one and his big heart, as it inspires us all to do good!
Absolutely! I love your line: “Cheers to the tall one and his big heart.” Indeed. I had no idea about EB before I heard about it in a little clip Damian made a year ago or earlier. It is a terrible skin condition. I am so glad we could make our tiny contribution to raise awareness! BIG HUGS to you Holliedazzle, you ROCK just because you are YOU, but also for mobilizing your fellow convention-goers to stick out their tongues at EB!