Battens Disease Family Association (BDFA)
Please jump for the Batten Disease Family Association because you can help us to support families and fund research into this devastating disease
Our vision is to be the central point of excellence in the UK for the support, guidance and networking of affected families and professionals as well as to increase awareness and facilitate research into all forms of Batten Disease to identify potential therapies and ultimately a cure.
Batten Disease is the main paediatric neuro-degenerative disorder in the UK. It affects 1:30,000 births and there are approximately 250 affected children and young adults in the UK. They are born apparently healthy, develop epilepsy, and lose their sight, speech, mental and motor abilities before dying early.
Having Batten Disease profoundly changes the child's and their family's life forever. The journey from before diagnosis to death is an ever changing picture of needs as the disease progresses. Unlike other major diseases where there is a huge awareness of the support, therapies and guidance mechanisms needed for the child and family, the families of Batten Children and young people are left isolated and numbed as most professionals do not understand the course of the disease and the needs of the child and their family. It is therefore essential that the families and professionals have a place to turn to for that support and guidance. This is the principle aim of the Batten Disease Family Association so that the affected children, young adults and families do not feel isolated and are given the tools to be able to continue to live life and reach their maximum potential.