2nd Annual Family Festival for Batten Disease

Mark your calendars for this event on June 7, 2008. In conjuction with the first International Batten Awareness Day we will be at Harris Road Middle School for a repeat of last year’s successful event, hopefully not with a repeat of the weather!!!! Just in case you missed last year I will update the photo page with more pictures. We will be adding a 5k run and 1 Mile Fun Run for 2008. This event was a tremendous gathering of families and friends, but we hope to grow it even bigger this year. I know it is a long ways off but please keep us in mind if you know anyone with businesses or with connections for silent auction items. Please pass along our website and/or contact information to anyone who may be interested in running and we are looking for sponsors to support us as well!

And for those that want to help but can’t attend be on the lookout for ways that you can support the BDSRA and International Batten Awareness Day. I will have more information soon.

Thank you for taking the time to be a part of our lives, we are blessed!!!!


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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