Stronger Every Day

It's a tale as old as time. A car, hurtling down the highway. A family riding therein. And the youngest child, becoming bored, decides to mess with the people around her.

Our girl is, to say the least, incredibly busy.

I'm a crier. I admit it. My wife busts my chops about it. I've been known to weep at cereal commercials. And in San Francisco this year, there was no shortage of tears.

I just wrapped up year two of a massive project. About Tess. And USP7. And some of the other 6999 other rare diseases.

Due to circumstances, Imma keep it short this week. Really short.

If they gave out punch cards for medical appointments, with frequent flyer miles for our Tess, she'd have enough points for a trip around the world at this point.

My wife and I are good at some things. But we are terrible at sitting still, for even a short while. We are bad at the pastime of doing nothing.

The map turns out to be the key to everything we're doing right now. I'm talking about the rare-disease map. We want to get on it. And it is slowly beginning to happen.

New Orleans. Known for beignets, Mardi Gras, and conferences about rare neurodevelopmental disorders.

TBE. Maybe you know what this stands for.