Batten Disease Family Association

The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases Neuronal Ceroid Lipofuscinoses (NCLs), commonly known as Batten disease. The BDFA is based in Hampshire but works with children, young people, families and professionals across the UK.

Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure.

Symptoms include an increasing visual impairment resulting in blindness; complex epilepsy with severe seizures that are difficult to control; myoclonic (rapid involuntary muscle spasm) jerks of limbs; difficulties sleeping; dementia; the decline of speech, language and swallowing skills; and a deterioration of fine and gross motor skills that result in the loss of mobility. Ultimately the child or young person will become totally dependent on their family and carers for all of their needs.

Currently there are no therapies or cure for any form of the disease and death is inevitable, depending on the type of Batten disease, between early childhood and young adulthood.

Contact: Admin ( admin@bdfa-uk.org.uk) and Support ( support@bdfa-uk.org.uk)
Phone: General: 01252 416323 | Fundraising: 07876 682589 | Support: 0800 046 9832
Website: www.bdfa-uk.org.uk/
Address: The Old Library, 4 Boundary Road, Farnborough, Hants, GU14 6SF