Dear BDSRA Community,

As you may know, BDSRA is creating a new Memorial to replace the beloved one that was built in 2004. The original Memorial was created by a group of families who had lost someone to Batten Disease and provided a place for families to visit during the Annual Conference, a legacy of those we have loved and lost. Now, at over 500 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 committee charged with creating this new Memorial is made up of families who were involved in the creation of the original one.

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 are reaching out to you directly to see if you can make a donation. Every amount will help.

To learn more or to make your gift, please visit

Thank you so much in advance for your financial support – please feel free to reach out either of us directly with any questions.

On behalf of all Batten families,

Charles Leffler
Memorial Committee Co-Chair

Steve Thompson
Memorial Committee Co-Chair