We had all sorts of video queued up and ready to go to illustrate Monday's column on Josh Winheld, the 29-year-old author of a memoir of his life with Duchenne, the most-common form of muscular dystrophy. But we messed up. You could barely make out his words over the din of his ventilator.
Thanks to the Gray Lady, here's six minutes of video on Josh. The New York Times featured the Cheltenham native today in a piece on new tactics to treat those with the disease.
The Times says this about fighting Duchenne:
Rather than concentrate only on a cure, some researchers are now intent on developing drugs that may alleviate the effects of the disease.
But, absent a cure, too many doctors around the country still assume there is little or nothing that can be done for the muscle-wasting condition, parents and specialists say.
“We’re in a stone age with Duchenne,” said Dr. Linda H. Cripe, a pediatric cardiologist at the Cincinnati Children’s Hospital Medical Center. She describes Duchenne patients as “a group of kids that pediatric medicine had forgotten, a group of lost boys.”