World Duchenne Awareness Day
On September 7, 2017 the fourth annual World Duchenne Awareness Day will take place.
It represents a great action of the global Duchenne Community to raise awareness for children and young adults living with Duchenne Muscular Dystrophy.
This initiative is, year after year, becoming so impactful involving more than 40 countries, around 70 organizations and for the second year is celebrated under the High Patronage of The European Parliament. Having Pope Francis acknowledge WDAD to make it more powerful. WDAD 2016 will be focused on Early Diagnosis: identifying and communicating early signs of Duchenne in order to guarantee a good quality of life to the children. Although some studies show a slight improvement in the age of diagnosis of Duchenne there continues to be a delay on average of around 2 years in terms of diagnosing through a health professional and in obtaining a CK test after parents have seen the first signs. To reduce these delays, neonatal screening for Duchenne is instrumental but so far it is only available in a few countries. Early recognition of the obvious signs is the best instrument we have at the moment. Delayed gross motor milestones, Gower’s sign, and delayed speech should raise a red flag and be followed up by a CK blood test as soon as possible. Early diagnosis of Duchenne will allow for timely access to genetic counseling, standards of care, and opportunities for clinical trials.
Through video’s the world will be informed about the Early Signs of Duchenne Muscular Dystrophy and the importance of Early Diagnosis.
The Manifesto will be shared in public places and online, and all over the globe thousands of Duchenne balloons will be released during local events. On www.duchenneballoon.org digital balloons will be released. The donation of these balloons will help raise funds for projects supporting Early Diagnosis programs for the global Duchenne Community.
Vital actions are being organized to bring an end to Duchenne, such as workshops and conferences. Families around the world help make September 7 incredible by organizing runs, walks and bike tours, triathlons and other sport events. From charity concerts to lighting bridges and buildings and stands at train stations: The global Duchenne Community will be raising awareness for Duchenne Muscular Dystrophy, because all together we can build a more inclusive world where equal rights and opportunities are guaranteed, differences celebrated and a cure for Duchenne Muscular Dystrophy discovered.
World Duchenne Awareness Day is initiated by United Parent Projects Muscular Dystrophy and made possible by the Duchenne community worldwide. All materials are made by parents, neighbors, friends.