Is called “Free soul” and is the path into sailing boat that supports the psychological and rehabilitative management of people with ALS, Sma and muscular dystrophies, through an experiential method that has self-care and one’s desire for freedom as its protagonist, being carried away by the waves of the sea and the wind, in complete safety. This second edition took off today, Tuesday 13 June, inspired by the words of Mark Twain, the writer who recounted the beauty of adventure “Drop the moorings, leave the safe harbor and let the wind swell your sails”.
The project is promoted by the NeMO Naples Clinical Center and activated together with the Colli Hospital – Monaldi Hospital, where the NeMO has been present since 2020, and in collaboration with the city’s Nautical Sailing Club and NeMO Lab. The 2023 edition is recalled by the very positive results of the clinical and psychological monitoring of the patients who participated in last year’s pilot experience.
“The surveys of well-being experiences and respiratory and cardiological parameters tell us that the project has had a positive impact on the quality of life of the patients who took part in it in the first edition”, he explains Joseph Limongelli, scientific director of the NeMO Center in Naples. «We are therefore happy that we can start again, giving the possibility for more people to participate in the course and also allowing us to continue doing research to validate a model of treatment on a sailing boat over time, that supports the care of people with neuromuscular diseases”.
The analysis – reads a note – demonstrates a significant improvement in the perception and experiences of the quality of life expressed by the participants. Each of them expresses the joy of having felt the protagonist of an adventure in which the disease does not represent a limit. Furthermore, the preliminary study reveals a reduction in the average scores of self-assessment and anxiety assessment, in the psychological tests administered before and after going out to sea. This is combined with the positive clinical response of functional parameters, which show an increase in peripheral arterial saturation and a reduction in heart rate after going out to sea. These are the first encouraging results that lead to the opening of this second edition to a larger number of patients.
Anna Iervolino, general manager of the Hospital of the Hills he says: «In synergy with the NeMO Naples Clinical Centre, we promote a model that focuses on multidisciplinary therapeutic protocols and that treats neuromuscular pathologies not only with drugs, but with a global care that enhances the psychological and rehabilitative aspects.The encouraging results recorded during the first edition of the “Anima Libera” project are proof of the effectiveness of this approach».
For 2023, the project envisages a route of ten outings on a sailing boat, which will have a height of about 14 meters and will be equipped for the safe transport of people with motor disabilities and the involvement of 80 people, identified according to clinical indicators allow them to face the open sea, who wish to get involved in a new challenge for themselves and together with others.
Participants in the presentation of the “Anima Libera” project
«“Anima Libera” brings together the mission of the NeMO Centers and makes concrete that continuity of care on which our model is based», declares Stefano Regondi, general manager of NeMO Clinical Centers and NEMO Lab. «We can only thank the institutions and bodies of this wonderful area, thanks to which the project can continue its journey in always giving new answers to the complex care needs of a community that has always been by our side. AND the sea, which is the heart of NeMO Napoli, could not fail to be the protagonist of our work».
A community, that of people with neuromuscular pathologies, which fifteen years ago thought about the creation of the first NeMO Center in Milan, for that desire for life that goes beyond surviving the disease and which today continues to support the project: Aisla Onlus, Famiglie Sma and Uildm the National Patient Associations and NeMO Members are the sponsoring bodies of “Anima Libera”, together with the Rare Disease Coordination Center of the Campania Region. The extraordinary novelty of this second edition – underlines the note – is the opening of the experience also to children with Sma and muscular dystrophies, for whom the project sees the sponsorship of the Santobono – Pausilipon Hospital. «Sharing emotions, smiles and joys with our children and their families is priceless», she explains Antonio Varone, director of the UOC Neurology and Neurorehabilitation of the Santobono – Pausilipon Hospital. «The “Anima libera” project projects us into a new way of experiencing the disease, expressing the same desire to rewrite the history of these pathologies that we are experiencing at the moment from a scientific point of view. The sailboat is for all of us the hope of imagining new life perspectives».
Also for this edition the instructors of the Italian Sailing Federation will be alongside the clinical team in sailing trips. The scientific, social and cultural objectives of the project, in fact, immediately involved the Sailing Club of Naples: over 100 years of activity to bring people closer to the beauty and challenge of sailing, each with their own resources, with the awareness that to reach the destination on a sailing boat, physical strength must give way to intelligence and the ability to know and appreciate the forces of nature. The project – concludes the note – continues to weave the nodes of a network that consolidates over time: once again this year Roche Italia, Ptc Therapeutics, Biogen, VitalAire Italia and Ortopedia Ruggiero have renewed their unconditional contribution to the which Novartis and Medicair join.