Today is Giving Tuesday! It is a a global day of giving we celebrate on the Tuesday after Thanksgiving and kick off the charitable season! So it’s time to be thankful for all the good stuff in our lives and focus on our holiday giving.
Well, most of you know Damian Lewis is a proud patron of Cure EB.
Sohana Collins is a 16 year old teenager who was born with Recessive Dystropic Epidermolysis Bullosa (RDEB) which means she lacks the protein that holds her skin together. Kids with RDEB 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. Sohana’s parents Sharmila and James Collins founded Cure EB (Formerly Sohana Research Fund) to raise awareness as well as funds for research to ultimately have a cure for this terrible skin condition.
Here is what Sohana says about EB.
We would very kindly like to invite you to give to the fund this holiday season. And even when you cannot afford a donation, there are still many ways to help – just pick one!
Donate to Cure EB: Your Donations Will Be Doubled Until 12pm UK Time on December 10!
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.
If you want to donate to Cure EB, the best time to do it is between 12 pm UK time December 3 (today!) to 12 pm UK time December 10, because then you can have your donation DOUBLED by generous fund matchers! All you have to do is visit Cure EB page on Big Give UK Christmas Challenge website here and donate securely. I just did it and I can vouch for the donation process to be short and secure. Please keep in mind that the matching funds could be limited so that the earlier you donate, the more likelier your donation will be doubled!
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.
Hassan has been lived with EB since the day he was born. When the doctors who treated him in Germany (the family fled the Assad regime in Syria) saw there was nothing else they could do further about his condition, they called Dr. Michele De Luca at University of Modena and Reggia-Emilia in Italy about an experimental treatment. Dr. De Luca, together with his colleague Graziella Pellegrini collected a square inch of skin from Hassan’s groin (one of the few parts of his body with intact skin) and isolated stem cells. Then they genetically modified these stem cells and created their gene-corrected skin grafts. They transplanted these onto Hassan in the following months, replacing 80% of his old skin.
In a few months, the young boy was discharged from hospital. In a month, he was back in school with strong skin and no need for ointments. Dr. De Luca shares the details with The Atlantic: “He hasn’t developed a single blister. He’s gaining weight. He’s playing sports. He’s got a normal social life.”
I know this all looks like a miracle. But it is not a miracle. It is science and research that has allowed Hassan to live a normal life! Please see the news segment from Sky News below about Sohana and the great news about this experimental gene therapy.
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. Thus, donating to Cure EB is obviously the most direct way to help and there is no small donation. That said, there are other ways to raise money and awareness about EB.
Organize a Butterfly Brunch!
Here is the drill: You set a date and choose a venue and invite a group of friends or colleagues for brunch. You may either charge your guests for tickets or invite them to make a donation to Sohana Research Fund. Sign up here, receive your Butterfly Brunch Pack in the mail and you are all set to have your eggs, sip your mimosas and raise awareness about EB and money for research!
Please note that if you organized a brunch and sent the donations through Big Give UK Christmas Challenge 2018 between November 27 – December 4 then you can see the funds doubled by fund matchers!
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.
All Sohana and all EB kids out there want for the Holidays is a cure for EB. Let’s give them the strength to fly! Thank you <3