2023-11-29 17:02:21
With a tour in the elementary and middle schools of Veneto, Lombardy and Tuscany, the path among the school desks of the educational campaign ‘La SMAgliante Ada’ concludes, which in these 3 years has seen Ada, the dog protagonist of the adventures of the comic book trilogy , tell children from all over Italy about the daily experience of living with SMA, spinal muscular atrophy. Over 350 students in the last years of primary school and the first years of lower secondary school were involved in an educational path that addressed the issues of disability and social inclusion, through the new language of comics. Many initiatives have been put in place: from workshops to national contests dedicated to the themes of bullying and sport, up to the experience of Wheelchairs football, football played on wheelchairs, which this summer saw kids with SMA competing in a mini -football tournament hosted by FC Juventus at the Wins – World international school in Turin.
“With Ada we had the opportunity to be alongside many children and teachers by making them experience a positive vision of disability – says Anita Pallara, president of Famiglie SMA – Talking about spinal muscular atrophy requires the ability to delicately and competently transfer what it means to live with this neuromuscular pathology. And it is precisely thanks to the universal language of comics that we have been able to address important issues that concern the lives of each of us, with the enthusiasm and frankness of those who have a great desire to know the world, like Ada and her friends. An exciting journey.”
Complex issues, addressed by combining multidisciplinary skills of psychologists, educators, clinicians and researchers, alongside a creative team, capable of translating in a simple and innovative way the importance of scientific research and targeted care to guarantee every child and child the chance to fully live her life plans, together with her peers.
“We are particularly grateful and fond of this project – declares Alberto Fontana, president of the Nemo Clinical Centers – Ada has allowed us to bring the value of scientific knowledge out of our clinical departments, fundamental for entering into relationships with others and recognizing them in their resources and within its limits. Training young people to understand what it means to live with a neuromuscular disease means teaching them to go beyond the fear of what is unknown and contributing to making a stronger generation, capable of welcoming others without prejudice”.
Thanks to this openness, the simple and profound questions related to life with SMA, to its emotional, social and daily implications, to sport, travel and passions, up to the more clinical and scientific aspects, have found acceptance and answers in the laboratories didactics from those who live with the pathology: “Is it bad to live with SMA? Have you ever been made fun of for using a wheelchair? Are there any cures for recovery?”. Questions which, thanks to the comic and the comparison, captured the children’s interest in reality, to learn more about it, to become curious and to deconstruct prejudices or beliefs.
“Ada opened up the possibility for young people to actively and in a fun way learn about the profound meaning of uniqueness – underlines Simona Spinoglio, educator and psychologist of the Sma Families association – She did this first by telling herself through her own life and then stimulating them to bring out their particularities. The narrative developed by including SMA among the most obvious and immediate characteristics of the protagonist, but not the only one that is important. Making the disease nameable and narratable even lightly and including disability among the possible particularities which you can witness, we managed to create a dialogue with the kids that is open to discussion, in-depth analysis and exploration”.
Three years that tell of a fascinating growth path: from elementary school to meeting new friends in middle school; from the fear of not being welcomed to the discovery of personal resources, to the value of friendship and dreams for the future, up to the desire for independence and self-determination typical of adolescence. Steps of growth that the trilogy of comics on Ada’s adventures accompanied and which translate into the issues of the project. Over 16 thousand copies of the 3 comic volumes distributed free of charge in Italian schools and the translation of the first volume into 12 languages (English, French, German, Spanish, Polish, Macedonian, Arabic, Chinese, Taiwanese, Russian, Serbian and Hungarian), to which 3 important awards come together: the Omar Prize for communication on rare diseases and tumors; the Life Science Excellence Awards as best communication project of the year; the CEO for Life Awards, awarded for having established new standards of excellence aimed at a better and more sustainable future.
The campaign was born in 2020 from the vision and commitment of the SMA Families association, of the Nemo clinical centers (specialised in the treatment and research on neuromuscular diseases) in collaboration with Nemolab, the first hub dedicated exclusively to technological research on these pathologies, with the unconditional educational contribution of Roche Italia. A synergy that aimed to educate on the value of disability as a resource, inclusion as an opportunity and scientific knowledge to understand others and experience what it means to build an inclusive society.
“Roche is proud to be alongside SMA Families and the Nemo Clinical Centers in this long adventure with ‘La SMAgliante Ada’ – highlights Amelia Parente, Rare Disease, Government Affairs & Transormation Head of Roche Italia – For 3 years Ada has been accompanying children and elementary and middle school children, teachers and their families and all of us in understanding the value of social inclusion through the language of comics, once again at the center of the educational laboratory carried out in the three schools which brought together disability and sport and from which the ability of the little ones to express themselves freely and lightly emerged clearly, demonstrating that for them normality is a relative concept. I thank, on behalf of Roche, the partners and schools that hosted the workshop, and above all ‘ The dazzling Ada’ to represent the language of the change that we want to see happen in the world.” Schools interested in adopting the volumes – we read in a note – can download the comic trilogy in digital version on www.lasmaglianteada.it. In view of the Christmas period, from now until December 10th it will be possible to request paper volumes by writing to [email protected].
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