Rare diseases, patients: “With cartoon on the Sma word becomes therapy”

“As an association that has been dealing with spinal muscular atrophy (SMA) for more than 30 years, we have gained awareness of how much even speech can be therapeutic. Through the words and the tales of “Lupo tells the Sma”, those affected by the disease can identify with and recognize themselves in the stories told by the cartoon, consequently feel welcomed and understood in the daily difficulties. Instead, those who do not have SMA, thanks to the word, will be able to know this disease. “Thus Djana Gjonej, councilor of the Association for the Study of Infantile Spinal Muscular Dystrophies (Asamsi), speaking at the presentation of the cartoon ‘Lupo tells Sma’, a series in 6 episodes, promoted by Biogen and SMA Families and distributed exclusively by Amazon Prime Video, with the aim of making the public opinion aware of SMA, a disease that affects approximately 1 in 10,000 newborns worldwide and affects approximately 850 people in Italy , most of them under the age of 16. “Knowing and talking about SMA – he added – means normalizing disability, it means learning to consider disability as a characteristic of a person and not as a reason for exclusion, which happens still too often because there is little and sometimes incorrect talk of spinal muscular atrophy and disability. ‘Lupo tells the Sma’ has great merit, to bring the therapy of the word to the general public for the first time ”. The project enjoys the full support and patronage, as well as the Sma community, also by the Association for the Study of Infantile Spinal Muscular Dystrophies (Asamsi), the Italian Association of Myology (Aim), the Italian Union for the Fight against Muscular Dystrophy (Uildm) and the National Council of the Order of Psychologists (Cnop). “The questions and reflections at the center of the stories of ‘Lupo tells the SMA’ – affirms Marco Rasconi, president of Uildm – are the ones that many patients, not only children, but also adults with SMA ask themselves in their lives. Giving voices to these doubts, telling these stories through a cartoon, makes it possible to make visible a diversity that not everyone knows and to normalize the difficulties that children, young people and families with Sma experience. It is a process, not easy or immediate, but important for breaking down mistrust and stereotypes ”. “Families with children affected by SMA or with any other disability – again Rasconi – must reach that kind of maturity that allows them to understand that the person himself is the protagonist of their existence and not the disease. They must understand that even with SMA one can live well and be happy. The tool of the fable, of the cartoon, allows us to get this message to anyone, because a society capable of welcoming everyone is a better society not only for people who have a disability ”. Sharing the positivity and value of the cartoon’s messages is also Valentina Baldini, president of Asamsi: “As an association we strongly wanted to support the project of the series, because we are convinced that it will help to reach more and more people, thus making Sma known, the difficulties and challenges it poses. A cartoon may seem like a simple tool, but in reality it is a precious resource for conveying profound messages with a flicker of joy and color ”.