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Below are facts about Parent Project Muscular Dystrophy and Duchenne. For more information, please contact Will Nolan at firstname.lastname@example.org or 800-714-5437.
About Duchenne muscular dystrophy (Duchenne)
Duchenne is the most common fatal genetic disorder diagnosed during early childhood. A progressive muscle disorder that causes loss of muscle function and independence, Duchenne affects approximately one out of every 3,500 boys and 20,000 babies born each year worldwide. The disorder manifests primarily in boys because the affected gene is found on the X-chromosome. Duchenne knows no other boundaries, touching all races and cultures.
Parent Project Muscular Dystrophy estimates that there are approximately 15,000 young men with Duchenne alive today in the United States. Duchenne can occur during any pregnancy regardless of family history. To date, there is no cure or treatment to stop the progression of Duchenne, and young men with Duchenne typically live only into their twenties.
About Parent Project Muscular Dystrophy (PPMD)
PPMD is the largest nonprofit organization in the United States focused entirely on Duchenne.
Since 1994, PPMD has improved the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion. 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, and legislation now exists funding Duchenne research and outreach programs.
The name of the organization reflects our grassroots origins, parent-led focus, and passion, and Parent Project Muscular Dystrophy is now a name recognized around the world as the leader in the Duchenne community. We hold the highest ethical standards and consistently receive high marks from watchdog organizations.
We take a comprehensive approach in the fight against Duchenne—funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options. Only this comprehensive approach will lead to the day that 100% of those diagnosed can turn to a treatment that will end Duchenne muscular dystrophy.