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Tracy’s Blog

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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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Tracy's Blog
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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Tracy's Blog
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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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…
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Tracy's Blog
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…
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Tracy's Blog
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…
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Tracy's Blog
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…
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Tracy's Blog
May 25, 2016

Duchenne Is in an Emergency. It’s Time to Pull the Brake.

When my teenage Charley was 3 years old, a nice doctor with a gentle smile handed him a death sentence. It was impossible to fathom,…
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Tracy's Blog
April 29, 2016

The Science is on our Side

A boy with Duchenne at Monday's FDA hearing on eteplirsen. On Monday, the FDA convened an advisory committee meeting to review eteplirsen, a precision medicine…
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