Every year on September 7, we celebrate World Duchenne Awareness Day. On this day, we raise awareness for Duchenne and Becker muscular dystrophy around the globe. The date, (7/9) refers to the 79 exons of the Duchenne gene. The World Duchenne Organization is asking Duchenne and Becker community in every corner of the world to join this day. Next to raising awareness with the general public, every year a special theme is chosen to that deserves more attention. This year that will be Duchenne and the brain.
Duchenne and the brain
The same protein that is missing in the muscle causing muscle breakdown, is also missing in the brain. This is causing problems such as learning difficulties or behavioural issues such as ADD, ADHD, OCD and autism. For many families in day to day life, this is causing more stress and worries than the physical problems.
Reaching full potential
We are pleading for early testing, appropriate testing, more research and better care on this aspect of the disease. This is really needed in order to have everyone reach their full potential. For more information about the awareness campaign and the materials we are creating, please visit www.worldduchenneday.org and stay up to date of all things #WDAD2020.
About World Duchenne Awareness Day
Over the years, more and more countries and organizations have become involved. WDAD was not only directed to the general public, but also managed to raise awareness on specific topics within the Duchenne Community itself, such as ‘Early Diagnosis’, ‘Duchenne Dreams‘, ‘Standards of Care’, and in 2019 the special theme was ‘Nutrition’ The Pope has dedicated a special communication to the Duchenne Community each year. The European Parliament has given its patronage, recognizing the value of this global event. Famous people have joined the cause. Even monuments have been lit up to celebrate this day.