Every year, hundreds of families cope with the diagnosis of
Batten disease with strength, courage and commitment.

Batten disease, or Neuronal Ceroid Lipofuscinosis (NCL), is a family of rare diseases caused by autosomal recessive genetic mutations resulting in the body.

These genetic mutations disrupt the cells’ ability to dispose of wastes. Cells are thrown out of balance with the build-up of proteins and lipids (fats). There are 13 known forms of Batten disease and you will often hear them referred to as CLN1-CLN14. It is estimated that 2-4 births per 100,000 in the U.S. are affected by Batten disease, though some researchers in the field suggest these numbers are low.

Patients with Batten disease suffer progressive neurological impairment because of their damaged cells.

While Batten disease mutations may vary tremendously for each child or adult, there is some overlap and common paths for diagnosis. Symptoms like visual impairment and seizures are among the difficulties they will face. In later stages of the disease, dementia and severe atrophy precede a premature death.