PPMD's Mission

To improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion.                

About Duchenne muscular dystrophy (Duchenne)

• Duchenne is the most common fatal genetic disorder diagnosed during early childhood.
• Duchenne is 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.
• Duchenne manifests primarily in boys because the affected gene is found on the X-chromosome.
• 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)

• Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the United States focused entirely on Duchenne muscular dystrophy.
• In part because of the efforts of PPMD, 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.
• Parent Project Muscular Dystrophy is not only a name that reflects our grassroots origins, parent-let focus and passion, but also a name recognized around the world as the leader in the Duchenne community.
• Parent Project Muscular Dystrophy holds the highest ethical standards and consistently receives high marks from watchdog organizations.
• Parent Project Muscular Dystrophy is the only Duchenne organization that takes a comprehensive approach in the fight against Duchenne—funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options.

 

Website: www.parentprojectmd.org