February 28, 2019
Guest Blogger! Charley Opens Up
Once a month, Charley shares his musings on life with Charley's Coffee Club, our dedicated group of donors who've signed up to make automatic monthly…
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November 30, 2018
Dodge Ball Win
I recently came across some old photos. They depict Charley in fifth grade winning a dodge ball tournament. Yes, you got that right. As you…
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November 30, 2018
What’s happening — and what’s in the works — for The Duchenne Program at UMass Medical School?
We recently launched one of our biggest and most important initiatives: The Duchenne Program at UMass Medical School. This brand-new clinic provides coordinated, comprehensive care…
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August 31, 2018
Happy to be Here, In the Moment
The relief in Charley’s voice was audible, even though the cell phone connection wasn’t crystal clear. You have no idea how happy I am to…
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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…
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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…
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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…
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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…
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July 31, 2017
“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…
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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…
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