First described in 1826 - more than 170 years ago - Batten Disease (Neuronal Ceroid Lipofuscinoses), thought to be one of the most common neurodegenerative diseases, remains an unsolved mystery today…a puzzling disease that assures its victims of only one consistent manifestation…early death.

An inherited, degenerative neurological disease, - Batten may affect persons of any age, but primarily affects infants, toddlers and school age children, beginning unexpectedly and leading to a progressive loss of brain function that later destroys bodily functions, eventually leaving the victim totally helpless.

Whether in the case of infantile (Santavnori), late infantile (Jansky, Bielschowsky), juvenile (Batten, Spielmeyer, Sjogren), or adult type (Kuf, Parry), the early symptoms of Batten Disease are confusing ones. It strikes without warning, affecting vision and causing seizures or convulsions.

Possibly most frustrating of all is the fact that Batten Disease is rarely diagnosed immediately, often being mistaken for epilepsy or mental retardation, even schizophrenia. And once diagnosed, there is no satisfactory treatment and no cure. The clinical course of the disease includes a marked decline in cognitive function; personality and behavior changes; loss of communication and motor skills; poor circulation; decrease in muscle mass; hyperventilation; hallucinations, and, finally, deterioration to a vegetative state that ends in death.