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What
is Duchenne Muscular Dystrophy (DMD)?
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 (PPMD)
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
Parent Project Muscular Dystrophy (PPMD)
is the largest nonprofit organization in the United States focused
entirely on Duchenne muscular dystrophy.
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 their 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 their 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 lead to the end
of Duchenne muscular dystrophy.
Specifically, PPMD is the only
Duchenne muscular dystrophy organization:
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To
invest in a broad research portfolio.
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To explore short-, mid-, and long-term treatment
and therapies.
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To
leverage $200 million into research centers and $22 million into
programs at the Centers for Disease Control.
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To be awarded a $15.4 million grant from the
National Institute of Health (NIH).
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To receive a seal-of-approval from the Better
Business Bureau’s Wise Giving Alliance.
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To receive four stars from Charity Navigator in
multiple years.
Parent
Project Muscular Dystrophy Overview -
YouTube
Video
For more in
depth information, please go to: www.ParentProjectMD.org
www.endduchenne.org
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