March 1st 2007
The diagnosis of Duchenne muscular dystrophy (DMD) is devastating for patients and their families. There is no standardized treatment and no cure, and boys with this disorder typically die by age 25 years because of respiratory failure or failure of the heart muscle. Until 13 years ago, parents of boys with DMD had nowhere to turn for support and no concerted efforts in clinical research were being made. This changed in 1994 with the founding of Parent Project Muscular Dystrophy (PPMD), a grassroots organization started by parents with the goal of creating awareness of DMD and generating interest and funding for research.