BDSRA conference 2010

I leave tomorrow for Chicago and the annual Batten Disease conference.  Jam packed schedule with Board of Directors meeting all day Thursday, welcome reception Thursday evening, meetings and information sessions all day Friday and Saturday and banquet Saturday evening.  Whew.  Tired just thinking about it.  Looking forward to seeing many people, old friends and new, but I know that it is going to be emotionally draining which makes it physically draining.  There are many things that I want to see and do, I hope to complete more than less……….but either way I know that it will be equally rewarding.  I will post about my experience when I return!!!

Stained Glass from the Batten Disease Memorial


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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