2009 BDSRA family conference

Another conference in the books, it is always bittersweet. So good to see other families, sibs and friends. Sad to see new faces and sad to see the decline in affected children that you know from previous conferences. One thing I do know, is that this group of people are the strongest, most amazing group of people you can ever gather in one room. Simply and utterly amazing……….

This picture is from my favorite part of the weekend. At the Saturday night banquet there is always a parade where all the affected kids come in and each conference has a different theme. This year it was Senior prom so the kids got to be the King and/or Queen of the prom.


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.

Posted in BDSRA, conference, St Louis

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