Batten Disease Support & Research Association (BDSRA) Australia

Batten disease, or neuronal ceroid lipofuscinosis (NCL), is a family of rare, genetic, progressive neurological disorders that primarily affect children. Children with Batten disease are typically born healthy and reach normal developmental milestones for a period of time before symptoms begin to appear. As the disease progresses, children typically suffer seizures, language decline, vision loss, cognitive and motor decline, childhood dementia and premature death, typically between late childhood and early adulthood. Founded in 1995 by parents of children affected by Batten disease, BDSRA Australia is dedicated to improving the well-being of children, young people and families affected by Batten disease in Australia through its three main objectives: 1) providing practical support to families affected by Batten disease 2) funding vital research towards treatments and cures 3) advancing education and awareness of Batten disease in Australia We rely on generous donations from the public to fund our programs and services. Find out how you can help turn HOPE into a CURE by visiting our website at https://bdsraaustralia.org