Charley Sets Me Straight
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…
The Woman Behind the Woman
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…
“Let’s just say that my life is a combination of bitter and sweet.”
“Let's just say that my life is a combination of bitter and sweet.” I try not to make a habit of plagiarizing my kids, but…
A Boy and a Symbol
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…
Marathon Pharmaceuticals, Come on Down
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…
A Tiny Big Moment
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…
The Long Haul
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…
Time is Precious
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…