World Duchenne Awareness Day
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Where is World Duchenne Awareness Day observed?
The day is observed throughout the world.
Who is World Duchenne Awareness Day observed by?
The day is observed by people impacted by Duchenne Muscular Dystrophy, their parents, and people who are constantly trying to give them a better life.
When did World Duchenne Awareness Day first start?
The day was first observed in 2014.
Who started World Duchenne Awareness Day?
Elizabeth Vroom and Nicoletta Madia, two active members of the World Duchenne Organization, started the day.
History And Timeline
As a community, we can just think about families, children, and adults who have to live life with diseases like Duchenne Muscular Dystrophy (DMD). The cure is still far away, so life is often not that great.
But, a special event like the World Duchenne Awareness Day can come as a respite for people and also push forward future research. So, let's know a bit about its history.
First Mention Of MD
Sir Charles Bell was the one to first write about Muscular Dystrophy in an essay about a boy having problems.
1830Recognition Of DMD
Duchenne was first described in 1834 by Giovanni Semmola and then by Gaetano Conte and Gioja in the year 1836.
1834-1836Naming Of DMD
Duchenne gets its name from the French neurologist Guillaume-Benjamin-Amand Duchenne, who described the disease in 1861.
1860sDeath Of Dino Ferrari
Alfredo Ferrari, the son of Enzo Ferrari, the founder of the Ferrari automobile, was affected by DMD and died in 1956 at 24.
1956Approval Of Eteplirsen
The exon-skipping drug was approved by FDA for DMD in 2016, and it was developed by Sarepta Therapeutics.
2016Traditions And Customs
There are no specific traditions and customs related to this day. But, the World Duchenne Organization usually comes up with a theme every year to gather around people and talk about the disease.
Ways To Observe World Duchenne Awareness Day
The best way to spend the day is by learning about Duchenne and Becker's Muscular Dystrophy. Try to find out how the past decades have changed the concepts of Duchenne and how families deal with it, especially those with adults or young adults having Duchenne.
If you know any family or families dealing with Duchenne, use this day to show them support.
Facts And Stats
- Brazil also observes its Independence Day on September 7.
- There are almost 250,000 individuals in the United States suffering from MD, and most of them are unaware of the disease, so this day is used to spread awareness.
- The current ratio of Duchenne Muscular Dystrophy is around 1 in 5,000 per live male birth. So why not make young adults more aware of these facts on this national day?
When is World Duchenne Awareness Day?
The day is observed on September 7 of every year.
What are some events similar to World Duchenne Awareness Day?
Similar events include Myotonic Muscular Dystrophy Awareness Day and World Facioscapulohumeral Muscular Dystrophy Day.
What are some reasons for observing Duchenne Awareness Day?
Observing the day helps raise awareness about the medical issues related to Duchenne and also supports those who have the disease.
How does this day affect people psychologically?
The day is great for those who have Duchenne, and they can meet others similar to them. Moreover, the day can bring more recognition in the community related to Duchenne Muscular Dystrophy.
Who is the founder of this day?
World Duchenne Awareness Day was founded by Elizabeth Vroom and Nicoletta Madia.
When Is This Day Celebrated
- Monday, September 07, 2020
- Tuesday, September 07, 2021
- Wednesday, September 07, 2022
- Thursday, September 07, 2023
- Saturday, September 07, 2024
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