June 30, 2018
D-Day
D-Day. We all know it, of course, as a pivotal moment in world history. The day in June 1944 when the Allied forces stormed the…
March 16, 2018
Charley Sets Me Straight
Charley sat in the passenger side of my car, taking deep breaths and talking to himself. I can't do this. I don't want to do…
October 27, 2017
The Woman Behind the Woman
This blog post is not about Charley. It’s not about a boy with Duchenne. It’s not even about a boy. It’s about a woman. But…
September 13, 2017
On the Go
Charley at work this summer in Brooklyn I never imagined myself saying this. But incredibly, it’s true. Charley cannot sit still. Of course he can’t…
May 31, 2017
A Boy and a Symbol
Just a boy and his sister on Spring Break I know my updates are all about Charley, all the time. There are a couple of…
February 17, 2017
Marathon Pharmaceuticals, Come on Down
I love good news just as much as the next person, so I would’ve loved to shout from the rooftops last week when the FDA…
December 29, 2016
A Tiny Big Moment
Charley and friends touring a Hudson Valley distillery (Jackson's on the left) I know a blog is supposed to be regular. But I just can’t…
August 18, 2016
The Long Haul
Last week Sheryl Sandberg -- CEO of Facebook, billionaire, best-selling author and, according to Forbes, the 7th most powerful woman in the world -- posted…
June 29, 2016
Time is Precious
SUMMER 2016 SNAPSHOTS al fresco dinner with Hayden "stand up" paddleboarding with Wilson firepit with Jackson and the ladies There have been some heart-wrenching delays…