In 2013, World Duchenne Organisation began imagining a day that was dedicated to raising awareness about Duchenne Muscular Dystrophy (DMD). A day on which a symbolic gesture would be made worldwide and a message would be transported everywhere. They looked into each other’s eyes, put pen to paper and started work on their plan.
7 September (7/9) was the chosen date, this referenced to the 79 exons (an exon is a segment of a DNA or RNA molecule containing information coding for a protein or peptide sequence) of the Duchenne gene; a symbol was chosen, a balloon to fly Duchenne out of this world. Everything then came together with the involvement of the Duchenne community in every corner of the world, they would play a significant part in helping to choose a specific theme to attract everyone’s attention. At this point, the plan was ready and the dream would become a reality.
The first WDAD took place on 7 September 2014 with the central theme of the day focusing on children and young people living with the disease on a global level taking charge, highlighting the problem that where you are born determines whether you have access to adequate care and assistance now and in the future. It was the year of the first balloon launch in many countries of the world. The video‚ ‘The Many Faces of Duchenne’, a coproduction of Duchenne families around the globe attracted over 60,000 views. More than 60 Duchenne parent and patient organisations were involved. Facebook exploded! The very next day, the group realised that they had started something incredible, and it kept growing day by day and year by year.
More and more countries and organisations have become involved since the launch in 2014. WDAD was not only directed to the general public, but also managed to raise awareness on specific topics within the Duchenne Community itself, such as ‘Early Diagnosis’, ‘Standards of Care‘. In 2019 the theme was ‘Nutrition’ and this year the theme is ‘Duchenne and the Brain’.
The Pope has dedicated a special communication to the Duchenne Community each year. The European Parliament has given its patronage, recognising the value of this global event. Famous people have joined the cause. Even monuments have been lit up to celebrate this day.
The above excerpt is a reproduction. Original text available at www.worldduchenneday.org’.
With the permission of The World Duchenne Organisation I’ll be posting a series of blogs in the lead up to #WDAD2020 to help to give you an insight into our son Alfie’s condition.
Please help to raise much needed Duchenne awareness by sharing this blog.