Exciting News

The University of Rochester was granted a $1.2 million grant from the National Institute of Health! Here is a link to a press release.

This is certainly a huge step in learning more about Batten disease.

On a lighter note, we have been extremely busy in the Hawkins household. Jeremy’s first soccer game was last Saturday. It was extremely hot, and to make matters worse we had to show up at 9:45 am for pictures before an 11:00am game. For those of you interested, 0-0 score.
Brandon and Jeremy had swim lessons tonight, we have missed the last two weeks for one reason or another, but they always have a great time with Ms. Amy. Jeremy at first didn’t want to get in the water because it was too cold, but then the lifeguard came over and she talked him into it(didn’t hurt that she was very cute), it was funny to watch. That’s my boy!!!!


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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