Batten Disease is the common name for a group of diseases called the Neuronal Ceroid Lipofuscinoses (NCLs). These refer to several different genetic life-limiting neurodegenerative diseases that share similar features and occur in children and adults worldwide.
Although the different forms of NCL are sometimes described according to the age of the child at the onset of the disease, they are actually classified according to the gene identified as the cause e.g. CLN2 (gene) late-infantile (age of onset) disease and CLN3 (gene) juvenile (age of onset) disease.
The NCLs are estimated to affect 1:30,000 births with there being approximately 200 affected children and young adults in the UK. They are born apparently healthy yet subsequently develop epilepsy, lose their sight, speech, cognitive and motor abilities; before dying between the ages of 5-30 (dependent on the specific diagnosis). There is much research into the NCLs, but no cure at present.
Battens Disease Family Associatuion
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 commonly known as Batten Disease. We are based in Hampshire but work with children, young people, families and professionals across the UK.We were in formed in 1998 with the help of SeeAbility and Contact-a-Family, by a small group of parents of children with Batten Disease . We were granted Registered Charity status in 2001 and the work of the charity has continued to go from strength to strength.Battens Disease Family Association Websitehttp://www.bdfa-uk.org.uk
If you want to find out more about Battens Disease or Support a charity then there are some useful links below
Battens Disease is an awful disease and only by raising awareness of it and by helping support research can we help in fighting against it. Please let others know about Battens Disease and than you for reading.