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. Continue reading “Do it Like Damian Lewis: HELP Raise Awareness for EB on Rare Disease Day!”
Most of you know that Damian Lewis is a proud patron of Cure EB. And Damian has taken to social media early this week to support this brilliant charity’s new campaign: Coffee to Cure EB.
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 is the proud patron of two charities, Cure EB and Sir Hubert von Herkomer Arts Foundation (HvH Arts). In the photo above, you see him with two formidable ladies: On the left is Debbi Clark, the founder and CEO of Sir HvH Arts, and on the right is Sharmila Collins, the founder and CEO of Cure EB. And Damian making time for these charities, attending their events and working to raise funds for them is always a TOP MOMENT of the year!
Today is Giving Tuesday! It is a a global day of giving we celebrate on the Tuesday after Thanksgiving and kick off The Big Give Christmas Challenge! So it’s time to be thankful for all the good stuff in our lives and focus on our holiday giving.
Damian Lewis is the proud patron of two charities, Cure EB and Sir Hubert von Herkomer Arts Foundation (HvH Arts). In the photo above, you see him with two formidable ladies: On the left is Debbi Clark, the founder and CEO of Sir HvH Arts, and on the right is Sharmila Collins, the founder and CEO of Cure EB.
And here I am kindly inviting you to consider giving to these two charities this holiday season. I am sharing information about both as well as about how to donate via The Big Give Christmas Challenge. Please note that timing is key because donations will be DOUBLED by generous fund matchers for a week starting today!