Parent Project Muscular Dystrophy was founded in 1994 by president and CEO Pat Furlong and a group of parents and grandparents who were frustrated by the lack of investment in Duchenne research. When doctors diagnosed her two sons, Christopher and Patrick, with Duchenne in 1984, Pat didn’t accept “there’s no hope and little help” as an answer. Duchenne is the most common fatal, genetic childhood disorder, which affects approximately 1 out of every 3,500 boys each year worldwide. It currently has no cure.
With Pat at the helm, Parent Project Muscular Dystrophy began, working to understand the pathology of the disorder, the extent of research investment, and the mechanisms for optimal care. Her sons lost their battle with Duchenne in their teenage years, but her fight continues, on behalf of all families affected by Duchenne muscular dystrophy.
The name of the organization reflects our grassroots origins, parent-led focus, and passion, and is recognized around the world as the leader in the Duchenne community. Because of our efforts, families affected by Duchenne have better access to state-of-the-art care information, research is moving forward at an accelerated pace, legislation now exists to fund Duchenne research and outreach programs, and there are multiple approved therapies.
Today, our passion continues to drive the organization to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne.