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 a college student, says about EB.
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 a Coffee to Cure EB!
Here’s Damian taking to Twitter to invite everyone to Cure EB’s most recent campaign!
https://twitter.com/lewis_damian/status/1721501478081142972
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.
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. You can find information about the research projects Cure EB is currently funding here.
Host 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 can charge your guests for tickets or invite them to make a donation to Cure EB. 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!
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! All proceeds go to Cure EB funded research ! You can buy a hardback copy on Cure EB website or a paperback copy on Amazon.
The fund’s online shop also has other Cure EB merch such as tshirts, tote bags, travel mugs, and more!
Spread the Word!
And 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 the young people living with EB want is a cure. Let’s give them the strength to fly! Thank you <3
