World Duchenne Awareness Day is now in its sixth year with events around the world.
The World Duchenne Organization (WDO) have created an awareness campaign ‘Together, we are stronger’ where they show that even in the COVID emergency, they can turn negative emotions into positive moments. This video has been translated in 10 languages and counting.
This year’s educational theme is ‘Duchenne and the Brain’. During this 2-hour programme, WDO have invited Prof. Mercuri, François Lamy, Dr. Doorenweerd, Martha Stein Carotta Henriques, Dr. Hendriksen and Prof. Muntoni to share their experience and stories on Duchenne and the brain.
On September 7, the WDO will be hosting a free educational livestream where clinicians, researchers and families share their stories, knowledge and other useful materials on DMD/BMD and the brain.
Elizabeth Vroom, chair of the World Duchenne Organization:
“The same protein that is missing in the muscle causing breakdown, is also missing in the brain. This causes learning difficulties and behavioural issues that in day to day life are causing more stress and worries than the physical problems. We plea for early screening, appropriate testing, more research and better care on this aspect of the disease.”