Well, hi. It's been a pandemic. It's been a rough year for everyone. In some ways living in fear of germs comes naturally to us, so parts...

You know what, it's hard enough sending your toddler to preschool for the first time. It is even harder doing it when they have epilepsy....

We made it to 7 months seizure-free in early November - an incredible milestone and the longest M had gone in his entire life without a...

We're starting Epidiolex! Wait, no we're not! Wait, yes we are! Wait, no we're not!

It's been a while. Here's what's been going on.

Here’s what it looks like when we prep for what could be a long night. M has been running low fever alongside some sniffles and a cough...

A few days ago, a woman on Twitter posted about her experience the previous evening. (Here's the easy-to-read version she blogged later)...

Hi! Those of you who are actually connected to me in real life may know me from such hits as “losing my job and health insurance while...

Because we are a bi-national family we have family and friends literally all over the world, and regular air travel is a fact of life for...

You may have noticed it’s been a little quiet lately. The last four weeks have been pretty long. First, M had pneumonia, which came with...

During that weekend in the hospital with M when they decided to do genetic testing and I discovered Dravet Syndrome, even as I was on an...

We'll be doing the Boston Epilepsy Walk in May in support of Epilepsy Foundation New England. If you're in the area, please consider...

I came across the Neebo wearable recently and joined their mailing list to be alerted when they went to pre-orders, and just got the...

Things I find myself referring to regularly - to be updated as I find more good stuff. Dravet Syndrome/SCN1A epilepsies The Dravet...

I am an engineer. I build robots. When you want a robot to detect more information about its world and be able to react to it, you add...

M decided to celebrate by having two myoclonic seizures in the wee hours of the morning as he fought off what turns out to be pneumonia...

I spent a year living and working in the Bay Area tech industry where every next person has gone keto, so when M's epileptologist...

I had gotten home from a business trip at 3 AM. 5-month-old M woke up for the day at his usual time, around 6:30 AM, and I was wrecked...