The bell that starts the new school year also announces the launch of the new chapter of the comic saga ‘The Adventures of SMAgliante Ada’. Presented at the Catella Foundation in Milan, during an event moderated by journalist Laura Berti, it completes the comic trilogy (the prequels were launched in September 2020 and 2021) jointly promoted bySma families association (spial muscle atrophy) and dai Nemo Clinical Centerswith the unconditional educational contribution of Roche Italy and the collaboration, in the third volume, of NemoLab. The promoters of the project communicate this in a joint note.
The third volume is part of the educational-didactic initiative ‘La SMAgliante Ada’, which from 2020 accompanies children and young people to know and experience what it means to build an inclusive society where everyone feels welcomed in their uniqueness, the third volume of the trilogy continues to tell the adventures of Ada, the little dog suffering from Sma, who with her bright red wheelchair lives the everyday life made up of school, friends, family, sports and much more. Like her peers, Ada has dreams, projects, fears, curiosities, expectations that fill her days and that every time become an adventure to live and tell, with that lightness and irony that young people know how to have in transferring even complexity. of life.
Born 3 years ago from the vision and commitment of the Sma Families Association and the Nemo Clinical Centers specialized in the treatment and research on neuromuscular diseases, with Roche Italia, today the project also sees the collaboration of NemoLab, the first pole dedicated exclusively to technological research on these pathologies. Educating on the value of disability as a resource, inclusion as an opportunity, scientific knowledge to understand others and learn to put yourself in their shoes, are the foundations that gave life to the project and that guided it in the creation of comic stories and of the didactic tables of the three volumes.
“Thanks to Sma Families, the Nemo Clinical Centers and, above all, to ‘La SMAgliante Ada’ for representing the language of change that we want to see happen in the world – says Amelia Parente, Rare conditions, Government Affairs & Transformation director Roche Italia – Roche is proud to be at the side of Sma Families and Nemo Clinical Centers in dialogue with the very young, their families and the educational institution to overcome the concept of normality and make only diversity normal. Different and equal: different in our uniqueness , equal in our rights. This is the society we want: a society in which words like diversity and inclusion become so obvious that they become useless “.
Party in full health emergency, in September 2020 – the note recalls – the path of Ada and her friends accompanied the growth of the little ones. From the story of the first great challenges faced by the protagonist in volume 1 – middle school, meeting new friends, the fear of not being welcomed and the discovery of personal resources – in volume 2 the themes of friendship and dreams of future, to arrive today at the third volume in which Ada and her friends, now adolescents, fully live the desire for independence and self-determination, with the management of the emotional tsunami of this age. “Disability in general, and a pathology such as spinal muscular atrophy in particular, are topics that are not always easy to deal with – highlights the president of Sma Families, Anita Pallara – and to be able to talk about them through a positive character like Ada and with a universal language. like that of comics is a great wealth for us. It means getting closer to a wide audience of young people, and doing it with the delicacy of a good story. This is the most important aspect for us: making ourselves known both in daily difficulties and in skills that we use to overcome them, demonstrating that basically the problems and resources of those who have an electric wheelchair are not so different from those of those who do not have one “.
Complex issues were tackled by combining the multidisciplinary skills of psychologists, educators, clinicians and researchers, alongside the creative team, capable of translating the importance of continuity of care, targeted care and scientific research in a simple and innovative way. to guarantee every boy and girl the opportunity to fully live their life projects.
“Ada’s journey is the expression of the journey that children and their families make in the Nemo centers – adds Alberto Fontana, president of the Nemo Clinical Centers – In the path of treatment, Nemo is at the side of everyone’s desire to become great, putting in place clinical and technological responses so that illness and physical limitations are only one of the many dimensions of life. It is a paradigm shift that requires the courage to rethink a social environment that places the person and his value at the center , regardless of everyone’s abilities and disabilities. And Ada’s message, with its lightness, reminds us that, together, all this is possible “.
The comics trilogy is also a virtuous path of knowledge of spinal muscular atrophy and what it means to live with this rare genetic disease which in Italy affects one in 6 thousand children and which leads to the progressive loss of motor skills. From the didactic tables of volume 1 on the causes and mechanisms of disease development, the second volume continues with an in-depth study of the clinical aspects and care needs, to retrace the evolution that research has had in this last chapter of the saga over the years and its key role in introducing new therapeutic possibilities for Sma.
“We wanted to dedicate a specific focus to the role of scientific research – underlines Valeria Sansone, clinical scientific director of the Nemo Center in Milan and full professor at the University of Milan, scientific manager of the project – In a historical moment in which we are all more aware of the need to have the appropriate scientific tools to read and understand reality, educating the little ones to a scientific thought, albeit through simple and creative languages, is of fundamental importance. And this is even more true in the face of pathologies such as Sma , for which today research is changing the natural history of disease. The didactic tables of Ada 3 – he concludes – are an adventure in the world of scientific research and technology, to give simple and concrete answers, as we have learned to do so. from our little patients “.
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