It is EB Awareness Week and here is proud patron Damian Lewis launching Cure EB‘s “Coffee to Cure EB” campaign last fall.
Please help this brilliant charity, which I am patron of, @CureEBorg, find a cure for this horrible skin disease and help prevent aggressive forms of skin cancer in early adulthood. Thank you, pic.twitter.com/1cNfeaSzTU
— Damian Lewis (@lewis_damian) November 6, 2023
Sohana Collins is a college student 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? The young people living with EB 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.
We cannot highlight 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 research. Thus, donating to the fund is obviously the most direct way to help and there is no small donation. And since 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.
Here is Poppy, a young girl who lives with EB, talking about the hardest part of EB: Never ending pain.
https://www.instagram.com/p/DBih4ZlvSaW/
And here is Sohana inviting us all to donate one day’s coffee to help find a cure for EB.
https://www.instagram.com/p/CzEXLBGt106/
So why don’t you do it like Damian Lewis and donate a coffee to help find a cure for this horrible skin condition? 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.
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
