Monthly Archives: September 2015

Amazing Things

And they’re off…

We started our long-awaited journey from NYC to Washington DC today. We met up with some familiar friends at Columbus Circle (Jen Egert; Vicki and Ted Mauseth and their two boys; Ken Jones), my wife Elizabeth, and many many others from nations around the world who observed from afar, obviously too shy to approach. We…


Why am I doing this fundraiser?

The rate of progression and the severity of FSHD varies widely among those affected, but my experience may be typical of the “average” course of the disease. I was diagnosed in 1968, and the progression has been slow and relentless. The slow progression meant there was never a time where I felt that tomorrow would be…

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