What it means to become great living with the challenges imposed by a Duchenne dystrophy: this was the theme of the World Awareness Day on Duchenne Muscular Dystrophy yesterday, September 7, promoted by the International Organization World Duchenne Organization and coordinated in Italy by The Parent Project Association. “Another opportunity – says Marco Rasconi, president of the Association of UILDM – to reaffirm our daily commitment to the person and his or her needs, a work that we share with all the companies that operate in the field of neuromuscular” “sixty years our Association fights to bring to the attention of the public opinion of all of the issues related to the lives of people with a neuromuscular disease: work and study, personal autonomy, accessibility and the removal of barriers, the loading and scientific research. In essence, all those aspects that contribute to the improvement of the quality of life. The World Awareness Day on Duchenne dystrophy is just an opportunity to reaffirm our daily commitment to the person and his needs, a work that we share with all the realities that operate in the neuromuscular field. Only together can we fight against Duchenne dystrophy, and all other forms of dystrophies”: the said Marco Rasconi, national president of UILDM (Italian Union for the Fight against Muscular Dystrophy), on the occasion of the World Day to raise awareness about Duchenne muscular dystrophy (World Duchenne Awareness Day) yesterday, 7 September, an event promoted by 2014 by the international organization World Duchenne Organization (previously known as the United Parent Projects Muscular Dystrophy) and coordinated in our Country by the Association of the Parent Project, which we had already reported last week on our pages.
As already reported, this year’s edition of the day was dedicated to adult life, highlighting what it means to become great living with the challenges imposed by a Duchenne dystrophy. As pointed out by the UILDM, “the video released for the event, available in sixteen languages (at this link), focuses on the importance that words have in building reality, and has the official hashtag #word of mouth. Each of us, by sharing it, helps to raise awareness of Duchenne dystrophy and to make our community more aware of the disease”.
Worth noting, in conclusion, that also yesterday, the 7th of September, was held the Duchenne Care Conference, an event for digital during which various specialists have addressed the clinical aspects, psychological, and social-related dystrophy, also giving space to the experiences of the lives of some adults that will tell the story through interviews (the conference was recorded and will soon be made available on YouiTube). (S. B.)