International Epidermolysis Bullosa Awareness Week

WHEREAS, International Epidermolysis Bullosa Awareness Week is a global effort dedicated to the promotion of “EB” awareness in countries around the world; and

WHEREAS, International Epidermolysis Bullosa Awareness Week was founded in 2009 by Gena Brumitt, daughter of the late Lillian “Pat” Barbrey; and

WHEREAS, an exceptionally courageous woman with a severe form of EB, Barbrey worked to raise EB awareness around the world; and

WHEREAS, EB is a group of debilitating genetic diseases characterized by the presence of extremely fragile skin that results in the development of recurrent, painful blisters and open sores likened to a second or third degree burn; and in severe forms of the disease, major complications may occur, including potentially-lethal infections, disabling musculoskeletal deformities, disfiguring scars, internal blistering, malnutrition, dehydration and early mortality risk; and

WHEREAS, for individuals with EB, the skin is so fragile that even minor friction, due to normal daily activities from birth onward such as crawling, walking, writing, eating, rolling over in bed and from the chafing of seams and tags on clothing, may cause serious external and internal wounds; and

WHEREAS, EB takes its toll on hundreds of thousands of patients, families and caregivers internationally, affecting both genders and occurring in every racial and ethnic group throughout the world; and

WHEREAS, presently, there is no known cure for EB, and most healthcare practitioners are not familiar enough with the disease to respond with best practices; and interdisciplinary care is extremely critical to address the disorder’s multiple aspects; and

WHEREAS, International Epidermolysis Bullosa Awareness Week is celebrated annually in the last week of October to increase understanding, reduce unnecessary deaths, raise funds for research and patient support programs, and improve the quality of life for people with EB in our global communities:

NOW, THEREFORE, I, Robert Bentley, Governor of Alabama, do hereby proclaim October 25 through 31, 2011, as

International Epidermolysis Bullosa Awareness Week

in the State of the Alabama.

Given Under My Hand and the Great Seal of the Office of the Governor at the State Capitol in the City of Montgomery on the 6th day of October 2011.

                                                                                 _____Governor Robert Bentley