Almost Christmas

Has it really been almost a month since I posted? As usual in this household we are running around like chicken’s with our heads cut off trying to get ready for Christmas. There is a huge concern in our house because we bought a second Christmas tree this year, where is Santa going to leave the presents? The boys are excited to see Grandma and Grandpa and Uncle Mike when they come down for the holiday.

Unfortunately, I have sad news to report. This week the Batten Disease community lost Elaine Johnston, wife of BDSRA Executive Director Lance Johnston. Elaine passed away on Monday after a short illness. She will be missed dearly by those that knew her.


I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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