Piombino becomes a port of hope with Aisla, a day of sailing, voices and rights

On the occasion of World ALS Day, Piombino has turned the spotlight on one of the most complex and urgent challenges of our time: taking care, with humanity and competence, of people with Amyotrophic Lateral Sclerosis. The event, promoted by Aisla with the collaboration of the territory, has combined the symbolic strength of the sea with the concreteness of social commitment, involving institutions, families, volunteers, health workers and local associations.

Also present was Paola Rizzitano, national councilor of Aisla, who emphasized: "The journey of a person with ALS - and of his family - resembles a crossing of the open sea. Precise instruments, expert hands and, above all, a clear route to follow are needed. This is why the Life Project is our compass".

Aisla has chosen Piombino to present two important innovations at a national level. The first is Isa, a new proximity digital application, designed to facilitate personalized and integrated care for people with ALS. The app, available from this fall on Apple and Google Store, was developed by Advice Pharma, the first Italian Contract Research Organization with a digital-oriented model. The demo was previewed during the event.

The second is the Aisla Scientific Editorial Board, a new editorial unit aimed at disseminating information based on scientific evidence, active listening and a culture of care. Leading the scientific review are Nicola Ticozzi, Director of the Neurology Unit of the Irccs Istituto Auxologico Italiano and Coordinator of the Study Group on Motor Neuron Disease of the SIN, and Massimiliano Filosto, Clinical-Scientific Director of the NeMO-Brescia Center and Coordinator of the Study Group of Clinical Neurogenetics and Rare Diseases of the SIN. An editorial project that brings together science, communication and experiences, to guide treatment choices and make information a tool for awareness.

Institutional messages were not lacking. The Minister for Disabilities, Alessandra Locatelli, wrote on social media: “We cannot stop working in the service of others, to give the possibility of living a full life, rich in bonds, affections and participation”.

A sign of closeness also came from the Deputy Minister of Labor and Social Policies, Maria Teresa Bellucci, who posted on social media: "Every existence is unique. We all have the right to be accompanied with respect and humanity."

Added to these are the public messages of the Osservatorio Malattie Rare – Omar, which recognized Aisla as “the protagonist of a collective movement that crosses the country from north to south to affirm the value of shared care”, calling June 21 “a day of light and rebirth”. And Cittadinanzattiva also reiterated the common commitment to protecting the rights of the most fragile people. The weekend in Piombino was enriched by moments of entertainment and sharing: on Saturday evening the show by ventriloquist Andrea Fratellini, winner of Italia's Got Talent, brought lightness and irony to the stage, while on Sunday morning the great solidarity sailing – opened by the official flag-raising and accompanied by the national anthem – united dozens of boats in a message of hope. Among them also the Elianto, symbol of accessibility and freedom. "Aisla thanks all the people and organizations that contributed to the success of the day - said Alessandro Porcelli, national councilor of Aisla and president of the Toscana Nord Ovest section -. This event comes from the bottom, from the strength of families and volunteers, and reaches far, up to the institutions. Piombino is proof that a cohesive community can generate change". Global Day 2025 saw Italy as the protagonist with dozens of solidarity events promoted by the network of Aisla volunteers: from solidarity dinners in Tuscany, to yoga and awareness meetings at the Policlinico Gemelli in Rome, up to the climbing of Etna. A long wave of initiatives that crossed the country and that, as the national President of Aisla Fulvia Massimelli recalled, "in the open sea no one is saved alone. But together, we can navigate even in the storm."