Two days……..

The countdown to our first big fundraiser is almost over, it has been a whirlwind the last week or so and we anticipate it will continue until our event is over. We hope to update you with pictures and funds raised over the weekend. Thank you everyone for your thoughts, kind words of encouragement and support in regards to our article in the Charlotte Observer last Sunday April 29. If you would like to read it here is the link to the story.

Thanks to Ann Helms and John Simmons with the Observer, it was very well done. I love the picture of Brandon with Cubby in the video presentation.

Also many thanks to Jeff Katz at WBT-1110 radio for spending alot of time on Monday talking about our case and the story. Wendy was able to call in and Jeff spent several minutes with her on air. Check it out at Click on Listen Now under the Jeff Katz show, and go back to the 4pm hour on Monday 4/30. He starts talking about our situation around 19 minutes into that segment and then again at 5 p.m. @ 7:50 and 33:30 in that segment.

We hope to see you on Saturday!!!!!


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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