For this year’s edition of the World Day to raise awareness about Duchenne muscular dystrophy – promoted to the 7th of September from the World Duchenne Organization and coordinated in our Country by the Association of the Parent Project – we wanted to pay particular attention to the theme of “Duchenne and adult life”, and the value of words like “community” and “awareness”, as well as the power of word-of-mouth, “because only in the many and together – as pointed out by the Parent Project – you can make a difference” Is from the 2014 the international organization of the World Duchenne Organization (previously known as the United Parent Projects Muscular Dystrophy) to promote the World Day for raising awareness about Duchenne muscular dystrophy (World Duchenne Awareness Day), the eighth edition of 7 September next, the coordinate traditionally in our Country of the Association of the Parent Project, will be another important moment of visibility, dedicated to this serious genetic disorder, which leads to progressive muscle degeneration.
For this year we wanted to pay particular attention to the theme Duchenne and adult life, “starting from the since – as explained by the Parent Project – which in recent decades the life expectancy of people with Duchenne dystrophy, has increased significantly, so that to become adults living with this disease presents new challenges, difficulties and opportunities”.
A theme, therefore, decidedly important, which will be treated in its Clinical, Psychological and social aspects within an international global digital event to be held in the afternoon of September 7 (hours 14-16; see details at this link)”.
About a hundred organizations from 46 countries around the world are active every day to make a difference for people living with Duchenne dystrophy. “And this is precisely the thinking of this great global movement – stress from the Parent Project – the World Duchenne Organization wanted to emphasize, in the spot dedicated to the World Day of this year (available at this link), the value of the words “Duchenne”, “community”, “awareness” and the power of word-of-mouth, because only so many, and together you can make a difference.” (S. B.)