Although the condition Duchenne Muscular Dystrophy was first described more than 150 years ago, not many people are aware of the impact of this disease on the lives of individuals with Duchenne themselves, their siblings and their entire family. More awareness among a wider audience would help to avoid a delay in diagnosis, better understanding of their problems, improvement of medical care and more support in general.
With this in mind, two active members of the World Duchenne Organization, The President Elizabeth Vroom and the Community Coordinator Nicoletta Madia, initiated in 2014 the World Duchenne Awareness Day on September 7th. Over the years this event has grown to a real global event with participants from all continents.
“The World Duchenne Awareness Day started as a plan and is becoming something magical, says Nicoletta Madia. I use the word magical because when you see on your laptop the world united for one cause, when you see the power of the community, the activism, you understand that the reality exceeded your expectations”.
In few years this global campaign achieved many goals and this year, during the global pandemic, is going to be “stronger” than ever.
“WDAD really became a global movement, so powerful and so united, I can only be happy and grateful, says Elizabeth Vroom. Emotional for me as a Duchenne mother to realize we are indeed stronger together, so many parents feel alone after the diagnoses but they will see during WDAD, how strong we are together”.