The Batten Disease Family Association (BDFA) was formed in 1998 by a small group of parents of children with Batten Disease The BDFA is committed to: Preserve and protect the health and promote the welfare of persons affected by all types of Neuronal Ceroid Lipofuscinosis (NCL) commonly known as Batten Disease To advance the education of professionals, carers and the general public on the subject of Batten Disease and its implications for the family To promote research into the management of Batten disease and to publish the useful results thereof and to support organisations promoting research into Batten disease