Batten Awareness Weekend

Please take a moment to share this press release  with your local media highlighting Batten Awareness Weekend.  The first weekend in June has held this designation for us to promote Batten Disease Awareness and it has grown each year in scope.  A personalized letter to the editor of your local paper  is also a great way to make it more meaningful.   Thank you for your continued support in our fight to find a cure for this horrible disease!!!!


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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