We’ve had some very sad news that Lance Johnston, former BDSRA Executive Director (USA) and Batten dad, has passed away after a long illness. Lance was an incredible advocate for US families and built the foundation of what BDSRA USA is today.

We have felt the benefits of his action and hard work all the way over here in Australia

BDSRA

7 August ·

It is with a heavy heart that we share the sad news that Lance Johnston, former BDSRA Executive Director and Batten dad, has passed away after a long illness.

BDSRA will be forever thankful for Lance. He was an incredible advocate for families and built the foundation of what BDSRA is today.

A message from Darlene Royalty, BDSRA Board President

“On behalf of the Board of Directors and staff for BDSRA Lance Johnston will be greatly missed. The Johnston family along with 14 other families started BDSRA at a small town motel. With hard work and a vision this group of people created the organization we are today. Lance gave his whole heart and soul to the families of children with Batten Disease. I would not know where some of us would be without this big family. He will be greatly missed.”

Included in this post are memories from when Lance retired and looked back on his 25 years of dedicated service.

We would love to include your messages and photos on a tribute page we are building. You can post them below, email them to nmurphy@bdsra.org, or post them in the guestbook here, https://www.bdsra.org/memorials/lance-johnston/623/guestbook/