Last week, Drs. Kerkovich and Noggle met with members of the Batten Disease Center at the New York State Institute for Basic Research in Developmental Disabilities in Staten Island, New York. They were pleased to meet Clinical Geneticist, Dr. Milen Velinov, MD, PhD; Nurse Administrator, Maureen Gavin; and mother of 3 affected by juvenile Batten (CLN1) disease, Edie Dockter. Milen, Maureen, Edie and their colleagues have done a tremendous job leading the development, curation and management of the Batten Disease Registry, which collects data on all Batten cases in the U.S. and abroad. Over 1,200 patient profiles have been entered into the registry. The Cell Culture Repository, also housed at NYSIBR, holds the largest collection of fibroblasts and lymphocytic cell lines from individuals with Batten disease and their families in the United States.