Patient Advocacy: September 7th Is World Duchenne Awareness Day
September 7th is the first “World Duchenne Awareness Day”. The purpose of the day is to raise global awareness for all boys and young men suffering from Duchenne Muscular Dystrophy (DMD). The first World Duchenne Awareness Day is started by the United Parent Project Muscular Dystrophy (UPPMD) organization. UPPMD is owned and managed by multiple global parent project organizations set up by parents of children with DMD. DMD organizations from Argentina, Algeria, Australia, Egypt, Denmark, and other countries are participating. Please see the World Duchenne Awareness Day website for information on additional country organizations.
Worldwide, about 250,000 children are affected by DMD. The majority of DMD patients are young men and boys, who progressively lose physical functions before they pass away from the rare disease. DMD is a genetic disorder that affects approximately 1/3,500 newborn boys. Few young girls suffer from the disease. DMD patients initially lose the ability to walk in childhood, and then lose abilities such as using arms, writing, feeding, and breathing. Most DMD boys don’t reach adulthood and die due to heart failure or respiratory problems. There is currently no cure for DMD, but several drugs are in development.
There are multiple ways of getting involved with World Duchenne Awareness Day:
• Tweet about September 7th using the hashtag #wdad14
• Watch & share the video, “The many faces of Duchenne”
• On Facebook, “like” the World Duchenne Awareness Day
• Release a “Virtual Balloon”: On Sunday, September 7th at 1:00 PM (whatever one’s time zone). Around the world partners will release a “virtual balloon” (see above Blog Post Logo) on Twitter, Facebook, and wherever one wants, in honor of someone with DMD or one’s wish for DMD. Use the hashtag #wdad14.
DMD World Awareness Day ”Virtual Balloon” courtesy of PPMD website.
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