September 7, 2021 will be recognized as World Duchenne Awareness Day. This day will be set aside in recognition of awareness surrounding Duchenne muscular dystrophy, a rare and debilitating genetic disease. The event will be used help spread information about the disease both among the medical community and the general public around the world. The event was first organized in 2014 by Nicoletta Madia and Elizabeth Vroom, members of the World Duchenne Organization. Every year the event grew, and now participants recognize the event on every continent.
About Duchenne Muscular Dystrophy
Duchenne muscular dystrophy is a neuromuscular disease, and it is one of the more severe types of muscular dystrophy. It is characterized by progressive muscle weakness that usually begins around age four and worsens quickly. As an X-linked genetic disease, boys are mostly affected, with girls only occasionally displaying mild symptoms. The disease is caused by mutations of the dystrophin gene. Symptoms of Duchenne muscular dystrophy include falling, abnormal walking posture, eventual loss of walking ability, muscle fiber deformities, intellectual disability (not in all cases), enlargement of the tongue and calf muscles, skeletal deformities, muscle atrophy, heart abnormalities, and difficulty with breathing. Treatment includes a variety of medications and therapies that can help alleviate symptoms and slow disease progression. Lifespan is usually into the thirties with good care. Better treatments for this disease are urgently needed. To learn more about Duchenne muscular dystrophy, click here.
Ways to Participate
Social media is a big part of World Duchenne Awareness Day. Start by connecting with the event’s profiles on Twitter and Facebook. If you want to make a post about the event, don’t forget to use the hashtag #WDAD2021 and mention @worldduchenne or @duchenneday.
Not sure what to share?? This awareness video is a great place to start. There’s also a ton of downloadable materials that can be found here, including social media banners, the press release, informative social media graphics, logos, and much more.
There are other ways to get involved too, such as donating to Duchenne patient support organizations. You can also try to set up your own event or light up a monument or landmark in your area.
