“Blue Bloods” star Bridget Moynahan is partnering with a Napa Valley winery to roll out her own pack of wine. And 10 percent of proceeds are going to benefit a good cause.
“I’ve teamed up with @ONEHOPEWINE to create a curated pack of wine to support #ebmrf and EB Awareness Week,” Moynahan tweeted Monday. “Your purchase will help children and families living with EB.”
Epidermolysis Bullosa Is a Debilitating Inherited Condition
As Moynahan tweeted, she is raising money in conjunction with EB Awareness Week. That’s short for Epidermolysis Bullosa, a cluster of rare diseases that cause brittle, blistering skin. In people with EB, the skin can blister in reaction to heat, rubbing, scratching, adhesive tape or even the slightest abrasion, according to the Mayo Clinic.
EB is usually inherited. It typically manifests in infancy or early childhood, although some people develop it in adolescence.
Unfortunately, the disease has no cure. If mild, it may improve over the years. But the only treatment is to attend to the blisters and try to prevent new ones.
EB patients present with a range of tough symptoms besides fragile skin. Those include nails that are either too thick or don’t form; tooth decay from poorly formed enamel; thick skin on the palms and soles of the feet; blisters inside the mouth and throat; scalp blisters, scarring and hair loss; difficulty swallowing as well as itchy, sensitive skin.
‘Blue Bloods’ Star Is Raising Money for the Epidermolysis Bullosa Medical Research Foundation
The Epidermolysis Bullosa Medical Research Foundation (EBMRF) launched in 1991 through the joint efforts of Gary and Lynn Fechser Anderson and Dr. Eugene Bauer of Stanford University’s School of Medicine, who needed more funding for his research on EB.
The Andersons had two children with EB, Chuck and Christine. Chuck died at 27 of skin cancer, which can be a side effect of EB. Christine passed away at age 14 of heart failure. As a result of the EB, both children had hand and foot deformities, chronic anemia, growth retardation and malnutrition. The most either of them ever weighed was 84 pounds. By the time they died, roughly 75 percent of their bodies were dotted with open wounds.
With the help of Paul and Andrea Joseph, the EBMRF started a Los Angeles branch in 2005. The Josephs have raised over $8 million for research into EB and are working to raise awareness about the excruciating condition.
The EBMRF relies on volunteers to keep its operating costs low. According to its website, charitable donations are funneled to research on the disease, not administrative expenses. Direct donations to the foundation are tax-deductible and can take any of several forms. You can also donate by buying a bottle of wine from the “Blue Bloods” star.