Today we spotlight actress, dedicated mother and activist Courtney Cox who has teamed up with Rue La La to curate an exclusive online shopping experience to benefit the Epidermolysis Bullosa Medical Research Foundation (EBMRF). Launching tonight, Nov. 15 at 8pm EST, 100% of proceeds from the sale, which features Cox’s favorite items from a range of beloved brands, will be donated to EBMRF; a volunteer, non-profit foundation dedicated to helping medical scientists learn more about EB, its causes, the development of its treatments, and ultimately, its cure.
“My friend, who’s my manager’s sister, has a child who has this rare genetic skin disorder,” says Cox. “Whatever I can do to ever get the word out about this, I like to get involved.”
Cox’s hand-picked collection will be available to shoppers at www.RueLaLa.com/CourteneyCox through Thursday, Nov. 17th at 8pm EST. Her digital store was created to reflect her and her daughter’s personal styles, and includes everything from designer kids clothing, organic cotton bath products from Coyuchi, and vintage Chanel handbags and deeply discounted prices.
What is EB?
EB is a group of diseases characterized by blister formation after minor trauma to the skin. This family of disorders, most of which are inherited, range in severity from mild to the severely disabling and life-threatening diseases of the skin. This rare genetic disorder affects all ethnic and racial groups. Estimates indicate that as many as 100,000 Americans suffer from some form of EB.
Try to imagine a person with painful wounds similar to burns covering most of his or her body. Unlike burns these wounds never go away. For children, riding a bike, skating, or participating in sports is difficult because normal activities of children causes chronic sores. Wounds may cover up to 75 percent of the body. Imagine a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. Imagine a life tied to hospitals for wound treatment, blood transfusions, biopsies and surgeries. The eyes often blister preventing sight for days. Chronic anemia reduces energy and growth is retarded. There is little hope for life beyond 30 years. Children with EB are often referred to as Butterfly Children because their skin is as fragile as a butterfly’s wings.