World Duchenne Awareness Day

On September 7, 2014 the first World Duchenne Awareness Day will take place. The 7th day of the 9th month has been chosen to represent the 79 exons in the dystrophin gene.

Duchenne charities around the world will raise awareness for children and young adults living with Duchenne muscular dystrophy.

Duchenne parents from all over the globe joined together to create the movie "The many faces of Duchenne" to show what this disease means to their children and their families. Help us kick off this awareness event by watching & sharing the video!

Duchenne muscular dystrophy is a devastating disease which affects approximately 250.000 children around the world. The vast majority of Duchenne patients are boys and young men who progressively lose their physical functions before they inevitably die of this cruel disease.

Duchenne Muscular Dystrophy is one of the most common fatal genetic disorders which affects on average 1 in every 3500 newborn boys, with very few girls suffering from the disease. Duchenne boys first lose the ability to walk during their childhood days and as they grow into adolescents they also lose the ability to use their arms, carry out everyday activities such as writing or feeding themselves, and their ability to breathe deteriorates as well.

And some boys have learning issues. As they grow into young men Duchenne boys finally succumb to the disease and die due to respiratory problems or heart failure. But many don't reach adulthood in the first place.

Duchenne patients urgently need good medical care. This improves not only their quality of life but it is also proven to prolong life spans by between 10 and 20 years. The knowledge about good medical care is widely available, but the majority of Duchenne boys still doesn’t have access to good care and facilities. We need to address this and find ways to improve the situation for all Duchenne patients.

There is currently no cure for Duchenne Muscular Dystrophy but for the first time ever there are several drugs under development. For a very small group of patients a first drug recently received Conditional Approval in Europe. Now we have to make sure that all Duchenne patients will benefit from new developments as soon as possible!

http://www.parentprojectmd.org

http://www.worldduchenneawarenessday.org

http://www.ppmdsrilanka.org