The basketball hoop

There’s a basketball hoop standing in my backyard.   In February, Alexander begged us for it, even though his walking began to decrease in December. He loved it and was so proud of himself every [...]

FDA – NOT FOR DUCHENNE

April 26, 2016   As I sit bleary-eyed  on the airplane flying home from what should have been a “successful” trip to DC, I am still stunned and disheartened from yesterday after a grueling [...]

Day at the Clinic

Today was the Center for Duchenne Muscular Dystrophy clinic day… A completely dreaded day for us all. How exhausting both emotionally and physically. The first thing I must say is the fact that [...]

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