Beyond Batten Disease Foundation
Research ServicesTexas, United States2-10 Employees
Beyond Batten Disease Foundation is a small nonprofit organization focused on juvenile Batten disease, based in Austin, Texas. It was founded in 2008 by Charlotte and Craig Benson after their daughter's diagnosis, with a mission to eradicate the disease by raising awareness and funding to accelerate research toward a treatment or cure. The foundation is described as a world leader in funding research for juvenile Batten disease. Its work centers on supporting research and coordinating with partners to advance care and guidance for the condition. In 2021, BBDF partnered with Care Beyond Diagnosis to establish internationally validated management guidelines for CLN3 disease, a rare and fatal neurodegenerative disorder.