BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION
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Mission Statement
BDSRA is the largest support and research organization in North America for Batten disease. It is dedicated to funding research, advancing education, and providing family support services. Batten disease is a neurodegenarative disease found primarily in children and it is the most common, inherited, genetic neurodegenerative disease in children. There is no treatment and no cure for Batten disease and it is a terminal diagnosis. Those diagnosed suffer from advancing symptoms of seizures, blindness, dementia, loss of motor control, loss of speech, and all have a shortened life span. There are multiple forms of the disease, which is most commonly diagnosed between infancy and school age. Batten disease occurs in approximately 2-4 births per 100,000 in the U.S. The arc of the disease can vary significantly for each patient, and the disease is frequently misidentified in the early stages.
About This Cause
As a rare, fatal, inherited disorder of the nervous system, Batten disease has no known cure. Batten disease primarily affects the nervous system and is part of a group of disorders known as lysosomal storage disorders caused by genetic mutations. Children with Batten disease suffer from progressive symptoms, and the disease is fatal. The Batten Disease Support and Research Association (BDSRA Foundation) is the largest nonprofit organization in North America dedicated to funding research, advancing education, providing family support services, and raising awareness of the disease and its impact. Founded in 1987, as an international support and research organization, a focus of BDSRA is to help unravel the mysteries of Batten disease by bringing the worlds of science, research, and health care together toward a common goal: the discovery of treatments and cures. BDSRA provides comprehensive family support services in all aspects of care and coping; it funds international research grants through a competitive, peer-reviewed RFP process; it funds cutting edge technologies and new developments in gene therapy, enzyme replacement, and drug discovery; it supports the development of an international patient registry; and it builds alliances and networks across state and federal legislative channels to raise awareness about rare disease and the needs of Batten families. Program areas include an annual family/research conference, physician and caregiver education, awareness campaigns, social support networking, research collaboratives, and clinical trial development and support. BDSRA is 100 percent funded through philanthropic donations. Charitable gifts are allocated to the highest priority programs and projects of the organization.