One of the goals of the Batten Disease Diagnostic and Clinical Research Center is to help families understand the nature of Batten disease. Educational materials are available through the Center and through the Batten Disease Support and Research Association. We will also provide education about Batten disease to other health care providers and to teachers.
Our goal in establishing the Batten Disease Diagnostic and Clinical Research Center is to establish a location in the United States that can provide accurate diagnosis and clinical evaluation of children that have been given a putative diagnosis of Batten disease. Upon visiting the Center, families will have an opportunity to meet with members of our working group who are performing research into Juvenile Batten disease or JNCL.
The following is a PDF version of Dr. Adams’ presentation at the 2009 BDSRA Conference, “Behavioral and Educational Strategies”. It includes general tips for managing behavioral and educational concerns that may arise in children with any form of NCL or “Batten” Disease. However, the information is not “Batten specific”. The information is also not a substitute for individualized services and care. We recommend that you consult with behavior / education specialists who know your child, before making changes to your child’s behavioral or school plan, and that any medical treatment decisions be made with input from your child’s treating physicians / treatment team.
Additional educational material can be found at http://www.bdsra.org
Batten Study Group
601 Elmwood Ave
Rochester, NY 14642
(directed to Amy Vierhile)