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.
Most of you know Damian Lewis is a proud patron of Cure EB.
Sohana Collins is a young woman 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 an older video explaining the life with EB as well as research opportunities to find a cure with Sohana, Sharmila, and Damian.
We cannot emphasize enough the importance of research to find a cure for EB. While experimental gene therapies are certainly giving hope to EB patients, we are still not there yet. The clock is ticking and we need more and more research. Thus, donating to the fund is obviously the most direct way to help and there is no small donation.
And here I am kindly inviting you all 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 from 12pm UK time on December 2 until 12pm on December 9!
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 2 (today!) to 12 pm UK time December 9, 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 did for the last couple of years and I can vouch for the donation process as 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!
Donate a Coffee to Cure EB!
Here’s Damian inviting everyone to Cure EB’s most recent campaign on Twitter.
And here is Sohana inviting us all to donate one day’s coffee to help find a cure for EB.
You can help have a world without EB at the cost of a coffee. And if you are not a coffee person (I confess that I am not since coffee gives me headache) you can give up on one day’s tea, smoothie and what have you. Cure EB has a menu for you to choose from!
Please note that donation via text only applies to UK residents. If you live in another country and want to donate your favorite beverage to Cure EB, you can always donate on Cure EB website here. I have been giving to Cure EB for almost a decade now and I vouch for the donation process as quick and secure.
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.
Get a copy of Binky’s Time To Fly for your kids or the kids around you this holiday season! All proceeds go to Cure EB! You can buy a hardback copy on Cure EB website where you may also find tshirts, hats, and totes, or a paperback copy on Amazon.
Spread the Word!
And please please please SPREAD THE WORD! Check out Cure EB website for more information. Follow them on Twitter , Instagram 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 other EB kids want for the Holidays is a cure for EB. Let’s give them the strength to fly! Thank you <3
