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What’s the plan?

  • September 18, 2017November 18, 2017

This weekend we had the honor and pleasure of attending my husband’s cousin Julie’s wedding in Washington D.C. Julie is one of those shiny bright sparks in the world. She is the definition of exuberance. (Don’t take my word for it, just ask one of her eight best friends/ bridesmaids.)

Not only were we excited to celebrate her marriage to the equally fabulous Justin, but we were thrilled to take the boys to D.C. for the first time, even if just for a few days.  We were going to take in as many sites as possible and our dear friends were coming in from New York to spend a day with us.

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My Podcast interview for “Last Cut Conversations” with Samantha…

  • September 6, 2017November 18, 2017

Two weeks ago I attended the Neuromuscular Disease Foundation’s 4th annual patient symposium. Though I thought I’d be ready to blog about it by now, it turns out my mind is still busy unpacking all of my thoughts and feelings around it. There was the collective grieving of the failed clinical trial, the experience of meeting patients I had only ever corresponded with on Facebook, the painful realization that I am by far no longer the least progressed patient in the room and finally, the sobering news that the most promising treatment-gene therapy-will require a staggering 3.5 million dollars in funding.

Read more “My Podcast interview for “Last Cut Conversations” with Samantha Paige” →

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