Cardiomyopathy in Becker MD

In many forms of muscular dystrophy, including  Duchenne muscular dystrophy (DMD)   and  Becker muscular dystrophy (BMD), weakness and degeneration of the cardiac muscle can be a major part of the disease, and one that frequently shortens life.Now, doctors at Ohio State University and Nationwide Children's Hospital in Columbus, Ohio, as well as Washington University in St. Louis and the University of Utah in Salt Lake City, have identified specific mutations in the dystrophin gene that predict whether heart muscle weakness (cardiomyopathy) will occur earlier or later in the course of BMD.

A Dozen Ways to Ask for Help

I was taught it is better to give than to receive. Don’t ask for handouts. Pull your own weight.All my life, I told myself, “You are only handicapped if you allowed yourself to be handicapped.” That belief worked for me when I could still stand and walk. Now that my legs don’t function and my hands are extremely weak, I recognize that my physical being has limitations. I have readjusted my self-perception and understand that I need people to help me.  

James Lupski’s story has all the elements of a good sci-fi tale: a research scientist determined to uncover the cause of his own genetic disease, a friend and colleague who’s also an intrepid gene hunter, and a futuristic technology that not only pinpoints the molecular cause of the research scientist’s disease, but also opens the door to a new era of personalized medicine.

DMD Clinical Research Network Studying Dystrophin-Deficient Heart

Update (Jan. 23, 2013):  As of early 2013, MDA's DMD Clinical Research Network includes these five sites: University of California, Davis (UC Davis); Nemours Children's Hospital in Orlando, Fla.; Washington University in St. Louis; Nationwide Children’s Hospital in Columbus, Ohio; and Children's Medical Center in Dallas. See Help Today, Help Tomorrow is Goal of MDA's Duchenne Clinical Research Network to learn more.