USeb is a nonprofit corporation organized and run primarily by people with EB. Epidermolysis Bullosa is a rare disorder characterized by severe blistering of the skin that can result in chronic open wounds that cover large surfaces of the body. People with EB can suffer malnutrition, persistent infections, anemia, digestion problems, disfiguration of the hands and extremities, cancer and even death. Our mission is to provide services that will assist people with EB in becoming more self-reliant through social, cultural, recreational, rehabilitative, educational and occupational opportunities. We value self-reliance because it inspires individual productivity, builds self-esteem, stimulates human happiness, and heals the dignity of the soul. These benefits particularly enable people with EB to not merely cope, but to rise to a position where they can succeed independently, help others to do the same, and contribute to society in worthwhile ways.
Our four main goals are:
*To continue holding an annual week-long summer camp for adolescents and adults with EB aimed at education, growth, and self-esteem boosting through FUN activities and workshops.
*To continue giving scholarships for education, medical care, and job training to people with EB, allowing them to become more independent and self-reliant by accomplishing their personal goals.
*To establish a mentor program that will pair prominent members of the community, covering a variety of trades and specialties, with an EB Survivor who wants to improve or enhance their skills in a particular area.
*To build or purchase a property that will become an EB Survivor home that will serve as an independent living community for individuals or families with EB where they can receive support, proper medical care and nutrition, and learn to become more self-reliant.