Parent Project Muscular Dystrophy (PPMD) is a national nonprofit organization founded in 1994 by parents of children with Duchenne muscular dystrophy. Duchenne muscular dystrophy is the most common lethal genetic disorder diagnosed during early childhood, affecting approximately 1 out of every 3,500 boys and 20,000 babies born each year. The organization’s mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, advocacy, education and compassion. PPMD is the largest grassroots organization in the U.S. entirely focused on Duchenne muscular dystrophy. It is headquartered in Midddletown, Ohio with offices in Fort Lee, New Jersey.
About Duchenne Muscular Dystrophy: Facts & Statistics
March 1, 2010 By Leave a Comment
Duchenne Muscular Dystrophy (DMD) is the most common lethal genetic disorder diagnosed during childhood. It is a progressive muscle disorder that causes loss of muscle function and independence. TO THIS DAY…there is NO CURE.
Because the Duchenne Muscular Dystrophy gene is found on the “X” chromosome, the disorder manifests primarily in boys. It knows no boundaries. It affects all races and all cultures.
DMD affects approximately 1 in 3,500 boys and each year, around 20,000 children worldwide are born with DMD.
Although many cases are genetically inherited, approximately 35% of all DMD cases are the result of a new random spontaneous genetic mutation that can occur during any pregnancy regardless of family history.
In 1986, the gene that causes Duchenne Muscular Dystrophy was successfully identified and isolated by medical researchers.
For more information, check out PPMD’s pages about Duchenne including:
Typical Progression of Duchenne Muscular Dystrophy
February 28, 2010 By Leave a Comment
Many parents do not recognize early signs of Duchenne muscular dystrophy (DMD) because their son’s movements only appear slower or a bit more labored than those of other children. Typically boys diagnosed with DMD lose their ability to walk between the ages of 10 and 14. These boys will lose most of their upper body strength, including the ability to move their arms, by their late teens. Also during their teenage years, young men with DMD will need respiratory support at night. Over time, their respiratory systems will weaken and they will require more constant support. Medical data suggest that young men with DMD survive only into their 20s.
For more information, please visit Parent Project Muscular Dystrophy: Stages of Duchenne.
Our Stories
June 1, 2009 By 1 Comment
Micah and Addison’s Story
Alex’s Story
More stories can be found at PPMD’s website under Parent’s Stories.
