It’s time to go back to class, even for Ada. We have come to know her in these two years: a young middle school student who faces all the problems of children her age, and does so in the saddle of a bright red pram. For those who meet her now for the first time and don’t know it, Ada is the protagonist of a comic and she has her Sma, Spinal Muscular Atrophy. Today, in Milan, the third volume was presented which collects her new stories and which closes the trilogy of “The Adventures of SMAgliante Ada”. In these three years, Ada and her friends have accompanied us on a path of growth: from the fear of not being welcomed by the classmates of the new school, to the discovery of personal resources in the first volume; from the sense of friendship to dreams for the future in the second; from the desire for independence and self-determination to managing the emotional tsunami of adolescence in this third book.
Space for science
But the trilogy is also a journey of knowledge of Spinal Muscular Atrophy, to tell what it means to live with this rare genetic disease that in Italy affects one in 6,000 children and leads to the progressive loss of motor skills. A part of the volumes, in fact, has the objective of explaining SMA to young readers, through didactic tables. With a simple but rigorous language, adapted to children, the causes and mechanisms of development of the disease are explained (in volume 1), the clinical aspects and care needs of patients (in volume 2) and the different phases of scientific research that led to new therapeutic possibilities for SMA (in volume 3).
The initiative
The project was commissioned by the SMA Families Association and the NeMO Clinical Centers (specialized in the treatment and research on neuromuscular diseases), realized thanks to the non-conditioning contribution of Roche Italia, and today also sees the collaboration of NeMOLAB, the first dedicated pole exclusively to the technological research on these neuromuscular. “There is a need to speak to children and young people about diversity, and actually also to adults, because it enters everyone’s life. Better still would be to talk about uniqueness, a word I prefer, ”he says Anita Pallara, President of SMA Families: “Ada does just that, she talks about the beauty of the uniqueness of each of us. Ada brings us closer to a large audience of boys with the delicacy of a good story. This is the most important aspect for us: to make ourselves known both in the daily difficulties and in the skills we use to overcome them, demonstrating that after all the problems and resources of those who have an electric wheelchair are not so different from those of those who do not. It has”.
The winners of the competition for schools
Comics are part of a broader educational-didactic project, which involved many schools. Over 15,000 copies were distributed and the volumes were translated into 11 languages. Among the main objectives is to educate on the value of disability as a resource, on inclusion as an opportunity, and on scientific knowledge to understand others and learn to put yourself in their shoes. And schools are called upon to actively participate, through a Comic Contest. At the latest edition, “Ada in… Let’s unbolt ourselves: a story of ordinary friendship”, over 500 children and young people from schools all over Italy participated, submitting more than 100 stories. To win the first prize was Camilla Gozzinisixth grade student of the Enrico Fermi Comprehensive Institute in Romano di Lombardia, led by professor Silvia Poidomani, with “Il flamingo Gambaletto”, the story of a pink flamingo that suffers the oppression of a group of bullies due to its physical characteristics , but who together with Ada and her friends manages to make her talents known.
Ada, beyond drawing
“Ada is not just a drawing, but a symbol: it is an example that it is possible to live your life even with SMA”, he explains Alberto Fontana, President of the NeMO Clinical Centers: “The adjective dazzling also brings us back to our desires, to what we expect from life. Here you are. Ada helps doctors to ask young patients what they want for themselves, and to create a sincere dialogue. In this sense, Ada gives a voice to our patients. In fact, in the NeMo centers we do not give ‘only’ therapy: we are called to build men and women who, despite the disease, must learn to consider themselves a resource and become aware that disability must not be a limit ”. Achievements also thanks to the creativity of a group of screenwriters, cartoonists and designers who got involved, comparing themselves with those who live the SMA and with experts: Danilo Deninotti, Giuliano Cangiano, Roberto Gagnor, Giorgio Salati, Gianfranco Florio, Mattia Surroz, Luca Usai and Emanuele Virzì.
The project for the classes
Throughout the school year, “La SMAgliante Ada” will continue to be the subject of an educational campaign, aimed at primary and secondary schools, which will propose the adoption of the comic trilogy as a teaching tool to raise awareness among children, families and teachers the inclusion of people with neuromuscular diseases such as SMA. The schools participating in the initiative will have a kit available for each student, consisting of the volumes and materials for the didactic laboratory. “Research today is changing the natural history of disease,” he concludes Valeria Sansoneclinical scientific director of the NeMO Center in Milan, full professor of the University of Milan and scientific manager of the project: “The teaching tables of Ada 3 are an adventure in the world of scientific research and technology, to give simple and concrete answers, so how we learned to do it from our little patients “.
All schools wishing to join the project will be able to download the kit on www.lasmaglianteada.it. Furthermore, the first 100 who request Volume 3 of “The adventures of the SMAgliante Ada” through the dedicated site, will be able to receive the paper version free of charge at home (for more information on how to adopt the project in schools, you can write to info @ lasmaglianteada. it).