In the State of the Union speech last night, Obama said “We do big things”.  It made me smile.   Some days ago in an interview with Diane Sawyer, Mike Kelly,   the astronaut husband representative Gifford (D, AZ).   He spoke about his sorrow, sitting by the side of his wife, praying that she will fully recover after the gruesome shooting in Arizona.  Ms. Sawyer asked if his perspective has changed after viewing the earth from the Space station.  Mike Kelly smiled a very gentle smile at the…

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What better way to celebrate a new year than with one of the largest awareness campaigns in the history of Duchenne muscular dystrophy! If you haven’t heard by now, Clay Matthews (the MVP of this community!) and the Green Bay Packers are going to the Super Bowl! Clay is the NFL star that recorded a public service announcement (PSA) sponsored in part by our friends at Cure Duchenne and Cadillac. Because of Cadillac’s generosity and devotion to raising awareness on behalf of our sons, this PSA…

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I like the idea of New Year’s Resolutions.  It makes perfect sense to look backwards for a moment, magnify the events in an effort to scrutinize what was done, learn from it, identify what might have been done better, with more finesse, more commitment, more strategic investment, more collaboration.    And I always think about starting early, in December for instance.   But in December, we put up the tree and think about the holidays.  We keep the tree lights twinkling day and night and no… Continue

 

My advocacy efforts started very early on. It all started at the PPMD Annual Conference, when Dr. Lee Sweeney said “To improve lives of patients with Duchenne and Becker Muscular Dystrophy the real change would have to come from the government through the National Institute of Health. Awareness about Duchenne and Becker needs to be increased within the NIH community”. I did not know any one at the NIH so I decided to contact my Congressional representative. In 2000 it was…

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