Today is Rare Disease Day, a day to raise awareness about rare diseases and the impact they have on patients’ lives. The primary target of the campaign is the general public; however, it is very important to raise awareness among policy makers, researchers, health professionals and anyone who has an interest in rare diseases. And we would like to take this day to raise awareness as well as funds to find a cure for EB.
Well, most of you know Damian Lewis is a proud patron of Cure EB.
The kids that are born with Recessive Dystropic Epidermolysis Bullosa (RDEB) or EB for short lack the protein that holds their skin together. They 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. Besides, they are under extra risk to develop skin cancer later in life and their life expectancy is not very long.
Sharmila and James Collins are the two heroes behind Cure EB (formerly Sohana Research Fund) – a fund to raise awareness as well as money for research to ultimately have a cure for this terrible skin condition. The couple founded Cure EB because their daughter Sohana was born with this condition. Here is what Sohana, now 17, says about EB.
Here is Damian sending a heartfelt message to support Cure EB on BGC Charity Day last September.
EB stinks. That is a fact. And while we may not be researchers working to find 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… Believe me, there are many ways to help – JUST PICK ONE!
Donate to Cure EB!
Collins family covers the cost of events, fund-raising as well as the administration services for Cure EB, so 100% of donations you make to the fund directly go into research projects. All you have to do is visit Cure EB website and donate securely here. There is no small gift and every dollar counts!
We cannot emphasize enough the importance of research to find a cure for EB. And the particular project you will contribute to with your donations this year is EB graft. This is a clinical trial which aims at using gene corrected grafts to treat chronic wounds of three patients with recessive dystrophic epidermolysis bullosa. As the grafts are gene corrected in all layers, they have the potential to permanently heal the areas they are grafted on to. 100% of the donations you will make will pay for the hospitalization during the grafting procedure for patients on the trial.
While this experimental therapy is very promising for EB patients, we need to remember that this particular operation works to renew the external skin, but EB affects the internal organs as well. Thus, even though this is an extraordinary development in finding a cure for EB, we are still not there yet. The clock is ticking and we need more and more research.
Buy a Copy of Binky’s Time to Fly!
“When Binky turns from caterpillar to butterfly, it’s a disaster! His wings won’t work and poor Binky can’t fly. Luckily, the spiders, silkworms and bees come to his aid. Together they work out how to give Binky a pair of bright, strong wings.”
Written by Sharmila Collins, Sohana’s mother and the true hero behind Cure EB, and illustrated by Carolina Rabel, Binky’s Time to Fly is a wonderful children’s book about empathy, hope, inclusion and helping others.
Spread the Word!
And please please please SPREAD THE WORD! Check out Cure EB website for more information. Follow them on Twitter and Facebook. Please SHARE the information. And please HELP so we can beat Epidermolysis Bullosa, a disease “Hard to say, Hell to Live with!” together!