The Batten Disease Memorial was dedicated on August 6, 2004 to the memory of the children that 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.

The Memorial is owned and maintained by the Batten Disease Support and Research Association, a parent organization established to assist families in dealing with Batten Disease and to pursue medical research.

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, Karen Watson and Bob Wilhelm.

ACKNOWLEDGEMENTS

Design

A student team from the North Carolina State University - College of Design developed the memorial design concepts under the leadership of Bryan Laffitte. Team Members were: John Carr, Rob Connolly, Rebecca Pezdek and Dawn Neuendorffer.

Artwork

The stained glass artwork was designed and created by Barry O’Brien of Claxton, Tennessee. He was born in Chicago, 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.

Fabrication

Design Dimension, Inc. of Raleigh, North Carolina fabricated the Memorial. Design Dimension graciously stores the Memorial when not on display.

Funding

Families and chapters of the Batten Disease Support and Research Association generously provide funding to create and maintain the Memorial.

To add a name contact: Lance Johnston, 800-448-4570, bdsra1@bdsra.org