With the World Duchenne Awareness Day we will raise awareness and money for Duchenne Muscular Dystrophy, a devastating disease. The WDAD theme of 2018 is the implementation of the Standards of Care. In this year, the goal of our fundraising effort is to implement the Standards of Care globally in different ways. One of them will be through the development of educational videos. Education is the first step to implement good standards of care and make Duchenne dreams come true!
Thanks to the collaboration of four not-for-profit organizations — the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMDand the World Duchenne Organisation UPPMD — a thoroughly updated and re-drafted Duchenne Family Guide is developed. This guide gives patients, families and caregivers access to the information necessary and enables them to work with their health care and support providers in ensuring optimal care.
In line with the Duchenne Family Guide, the World Duchenne Organization published a series of educational videos, called explanimations to make Duchenne Care information accessible for as many people as possible and more specific for children as well. All twenty videos are published on the YouTube channeland can be found on the DMD-carewebsite. Each video provides a clear explanation of a different aspect of Duchenne Muscular Dystrophy care. Each country can then make the video available in their own language by adding their translation in both voice and text.
Head over to www.worldduchenneday.org for more information about this day!
You can help raise money for implementing the latest Standards of Care by making a donation. We do that by releasing a virtual balloon: a colorful icon that sparks joy and is easily recognized. Releasing virtual balloons is really easy. Click on the button and determine your own price of the balloon (already starting from € 5). Setting up a Paypal account to make your payment complete will only take a minute. By making a donation you make a difference in the lifes of a quarter million children!
Another way to release a virtual balloon is by adjusting your social media profile picture with a red balloon or the special Facebook Duchenne Balloon filter. A simple way to show the world your support to all patients affected by Duchenne!