Explaining SMA (and inclusion) to children: three years with “La SMAgliante Ada”

Explaining SMA (and inclusion) to children: three years with “La SMAgliante Ada”


“The SMAgliante Ada” kept us company for three years: many adventures of the little dog with SMA, spinal muscular atrophy, contained in three comic volumes which were distributed free of charge in over 16 thousand copies in Italian schools (with the first volume translated into 12 languages). But “La Smagliante Ada” is not just a comic: it is a project made up of workshops, contests and events to tell the daily experience of those who live with the disease to children in the last years of primary and middle school throughout Italy, involve them and accompany them on a long journey of growth and inclusion, also against discrimination. Events such as the Wheelchairs Football mini-tournament, football played on wheelchairs, which last summer saw the kids with SMA compete, hosted by FC Juventus at the Wins – World international school in Turin.

All this long journey now comes to an end, with the end of the tour in the schools of Veneto, Lombardy and Tuscany, which reached more than 350 children and teenagers. “With Ada we had the opportunity to be alongside many children and teachers by making them experience a positive vision of disability – she says Anita Pallara, President of SMA Families – Talking about spinal muscular atrophy requires the ability to delicately and competently convey 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 themes that concern the lives of each of us, with the enthusiasm and frankness of those who have a great desire to learn about the world, like Ada and her friends. An exciting journey.”

Countryside

The “La SMAgliante Ada” educational campaign was born in 2020 from the vision and commitment of the SMA Families Association, of the NeMO Clinical Centers – specialized 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. “Ada has allowed us to bring the value of scientific knowledge out of our clinical departments, which is fundamental for entering into relationships with others and recognizing them in their resources and limits – he says Alberto FontanaPresident of the NeMO Clinical Centers, who continues – Training young people to understand what it means to live with a neuromuscular disease means educating them to go beyond the fear of what is unknown and contributing to making a stronger generation, capable of welcoming the anything else without prejudice.”

Against bullying and for inclusiveness

Ada, like all children of her age, experiences the transition from elementary school to middle school, tackling issues such as the fear of not being welcomed, the discovery of personal resources, the value of friendship and dreams for the future, up to desire for independence and self-determination typical of adolescence. To do this, psychologists, educators, clinicians and researchers were involved, who supported the creative team. Objective: to translate the importance of scientific research in a simple and innovative way, without ever neglecting the emotional aspects. “Ada opened up the possibility for kids to actively and in a fun way learn about the profound meaning of uniqueness – he comments Simona Spinoglio, educator and psychologist of the SMA Families Association – She did it 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. By making the disease nameable and narratable even lightly and by including disability among the possible peculiarities that one can witness, we managed to create a dialogue with the children open to discussion, in-depth analysis and exploration”.

Where to find the trilogy

In these three years, the campaign has obtained important recognitions: the OMaR Award for communication on rare diseases and tumors, the Life Science Excellence Awards as best communication project of the year and the CEO for Life Awards. Schools interested in adopting the volumes can download the comic trilogy in digital version on www.lasmaglianteada.it. Furthermore, in view of the Christmas period, until December 10th it will be possible to request paper volumes by writing to [email protected].



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