My first full day in Chicago is not in the books, and I’ve already managed to glean a lot of great information about infantile and late infantile Batten disease research. I look forward to sharing many details in our summer e-newsletter. It’ll be delivered in the next few weeks, so if you haven’t already, please be sure to go to our website and sign up to receive it!
Talking to scientists – getting the scoop on where things stand straight from the source – is incredibly important to the work we do at Taylor’s Tale. It’s not enough to help me sleep at night, though. Those conversations give me plenty to chew on, but I go somewhere else for my daily dose of inspiration – a medication I sorely need whenever I start to feel angry at a world that includes Batten disease or get impatient about the speed of science.
Today’s dose of inspiration is this picture of Taylor and our dad while on vacation in the Virgin Islands last weekend. Dad told a joke at his own expense and asked T if he should puff up his chest for the camera. Right as I snapped the picture, T considered this and laughed. It was the best moment of that day. That’s the kind of moment that helps me run faster and fight harder. It’s the kind of moment that makes my dreams good again.