In 2004, a group of families who had lost someone to Batten Disease came together at the request of the BDSRA Board to create a beautiful memorial to those lives. The BDSRA memorial provided a place for families to visit during the Annual Conference, a legacy of those we have loved and lost.
As the years passed, the Memorial grew. Now, at almost 600 names, it has outgrown our ability to keep up, and we are launching a new Memorial to take its place. While the old Memorial is deeply cherished, the new one will provide a living legacy – and the ability to grow as needed.
The Memorial Committee of the BDSRA Board of Directors authorized the original Memorial in 2002 and appointed a committee to oversee its creation and management. This committee is now spearheading the new Memorial. Committee members are Charles and Wanda Leffler, Steve and Bonnie Thompson, Brock Benroth, Ron and Lugine Hein, Larry Killen, and Randy and Darlene Royalty.
Key features of the new Memorial include:
- Interactive touchscreen interface – the ability to search for a specific name
- A profile for each name that includes a story, family information, and photo
- Features the custom stained glass from the original Memorial
- Future phases include the ability to add/view information through the internet/social media
We are working diligently to have this ready for the July Annual Conference in Denver – but we need your help. The total cost for a new Memorial is $85,000. Rather than have BDSRA divert those funds from vitally needed programs, we have reached out to the BDSRA community to see if they can help us meet the fundraising goal. Every amount will help – if you’d like to help, please click the Donate button above.
Parents and family members are also 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 (614) 973-6013 or firstname.lastname@example.org.
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.
Families and donors to the Batten Disease Support and Research Association generously provide funding to create and maintain the Memorial.