Pennsylvania Batten Disease Support is a non-profit group organized to promote awareness of Batten Disease and provide support for families dealing with it daily. Batten Disease, also referred to as Neuronal Ceroid Lipofuscinosis, is a rare genetic disorder that affects children and adults. People suffering from this condition have mental impairment, worsening seizures, progressive loss of sight, and a decrease in motor skills. They eventually become blind, bedridden, and unable to communicate. At this time Batten Disease has proven to always be fatal.
The mission of Pennsylvania Batten Disease Support (PABDS) is to provide funding for medical equipment, living expenses, and research projects to aid Pennsylvania families living with the challenge of Batten Disease every day. PABDS hopes to provide grant opportunities for those whose lives are affected by this condition. Batten Disease is currently always fatal. Because there are so few people in the country who are victims of Batten Disease families have to educate the public as well as cultivate support. We are looking for support and working for a miracle.