The Batten Disease Memorial was dedicated on August 6, 2004 to the memory of the children and adults who have been lost to Batten disease. May it never be forgotten the enormous toll this disease continues to take while the search for a treatment and cure is pursued.
Parents and family members are invited to add their loved one’s name to the memorial. The Memorial is owned and maintained by the Batten Disease Support and Research Association. To add a name, please contact us at either (800) 448-4570 or firstname.lastname@example.org.
Memorial Committee BDSRA Board of Directors authorized the Memorial in 2002 and appointed a committee to oversee its creation and management. Committee members are Web Ireland, Charles Leffler, Vikki Schwartz, Steve Thompson, Karen Watson and Bob Wilhelm.
A student team from the North Carolina State University’s College of Design developed the memorial design concepts under the leadership of Bryan Laffitte. Team Members included John Carr, Rob Connolly, Rebecca Pezdek and Dawn Neuendorffer.
The stained glass artwork was designed and created by Barry O’Brien of Claxton, Tennessee. He was born in Chicago, is retired from the U.S. Postal Service, and has been working with stained glass for over 25 years. Barry created the sun catchers for the memorial service at the 1999 and 2006 Tennessee BDSRA conferences.
Design Dimension, Inc. of Raleigh, North Carolina, fabricated the Memorial. Design Dimension graciously stores the Memorial when not on display.
Families and Chapters of the Batten Disease Support and Research Association generously provide funding to create and maintain the Memorial.