Adnkronos Rome, May 17 (Adnkronos Salute) – Two intense, participatory, authentic days. The national event of Aisla ended today at the Hotel Federico II in Jesi, which brought together over 130 representatives from all over Italy, including section presidents, territorial referents, operators, volunteers and people with ALS for two days of training, discussion and associative democracy.
A moment that strengthened the sense of belonging to a community that chooses to be there every day, with competence, passion and responsibility.
There is an Italy that cares, that listens and that does not back down. With these words - a note reports - we can encapsulate the deepest meaning of the first day of the Aisla 2025 National Conference: an event that gave voice to a generous and competent Italy, ready to build, together, a more humane, fair and sustainable care system. 'Aisla calls upon the Italy of care' was not only an evocative title, but the declaration of intent of a concrete alliance between institutions, professionals, families, volunteers and young people, united by the desire to transform listening into action. The day opened with two highly symbolic moments. 'Aisla Forma', at the Carlo Urbani Institute in Porto Sant'Elpidio, brought the culture of solidarity to school desks. Not just a science lesson, but an invitation to common civil responsibility. Following this, 'Aisla Incontra' brought together in a participatory agora the association's representatives from all over Italy, strengthening the sense of community and restoring centrality and recognition to the association base.
In the afternoon, the debate opened up to civil society with the round table 'New regulatory perspectives and the Life Project', an opportunity for direct dialogue with institutions and experts to address the great challenges of disability and neurodegenerative diseases. The concept of the Life Project emerged as a paradigm of a necessary change, based on the person and not only on the pathology. The Minister for Disabilities Alessandra Locatelli, the Deputy Minister of Labor and Social Policies Maria Teresa Bellucci, the Guarantor Antonio Pelagatti, the regional councilor Filippo Saltamartini and the deputy mayor of Jesi Samuele Animali spoke, all agreeing in recognizing the "value of co-responsibility" and in calling for a "shared commitment between the public and the Third Sector". With them also Paolo Bandiera, Director of General Affairs of Aism (Italian Multiple Sclerosis Association), testifying to an increasingly strong and synergic inter-associative network.
Fulvia Massimelli, national president of Aisla, together with Pina Esposito, national secretary of Aisla, Paola Rizzitano, national councilor of Aisla, and Alberto Fontana, secretary of Nemo Clinical Centers, gave voice to the heart of the association, restoring the depth of a daily commitment that becomes a system, an alliance, a network. "The right to care cannot be a privilege or a territorial lottery: it must be guaranteed, everywhere, to everyone", they reiterated.
Following – the note continues – were two particularly evocative moments. The first, of great spiritual value, was the memory of Armida Barelli, the first woman with ALS to be recognized as blessed. The historian Ernesto Preziosi, her biographer, drew an intense and intimate portrait of her, restoring the generative force of her testimony. The second, highly symbolic, saw the creation of the 'Great Tree of Life', a work created hand by hand by volunteers. The message printed on the giant painting reads: "Each of us is unique and wonderful, but together we are a masterpiece". A powerful image, which was able to convey the spirit of the entire conference. The day ended in a sign of wonder, thanks to the artists of the Ente Palio di San Floriano di Jesi who gave Aisla an exciting and generous show, including flag-wavers, aerial acrobatics and fire games. A performance that recalled the magic of the circus: that rare ability to enchant and unite, to make the eyes shine and warm the heart. A tribute to life, in its most festive and shared form.
The second day, today May 17, ended with the National Assembly of Aisla members, the culminating moment of the 2 days, not a formal act - it is specified - but a gesture of community awareness. We reflected on the results achieved, the challenges faced, and above all on the future: a future that the association is building also thanks to a new digital solution dedicated to people with ALS and caregivers, which will be available by autumn on the Google and Apple stores.
During the meeting, the 2024 financial statement was approved and the Social Report was presented, a document that explains the meaning and impact of the actions implemented by Aisla. In 2024, the association guaranteed over 20 interventions in favor of 2.145 people with ALS, families, caregivers, health workers and volunteers. Thanks to the support of almost 20.000, including donors and 5×1000 contributors, over 2 million euros were raised, of which 87% was allocated to the association's mission. The 64 territorial offices provided almost 8.000 services, with an increase of 32% compared to the previous year. The Aisla Listening Center confirms its strategic hub, reception space and observatory of real needs.
A network that generates value: Aisla – the note concludes – continues to safeguard and nurture the founding alliances with Fondazione AriSla, the main Italian body for the financing of research on ALS, and Fondazione Serena, the body that manages the Nemo clinical centers. Two experiences born from the will of the association, which demonstrate how subsidiary co-design is a model capable of producing excellence and real impact. "Aisla is all this: a network that renews itself every day, a community that grows, an organization that chooses to give more time to life", concludes Massimelli.