After two years of work, the regional section of the Italian Amyotrophic Lateral Sclerosis Association (AISLA) was set up in Lazio. An achievement that is worth the commitment made, underlines Aisla: carrying on the battle for the dignity of life and for the rights of families with amyotrophic lateral sclerosis (ALS), so that no one is left behind. The formalization – informs a note – took place on Sunday 5 March, at a time that identified, thanks to the shareholders’ meeting, the territorial directive council. (VIDEO)
“Finally – says Paola Rizzitano, lawyer, newly elected president of Aisla Lazio – we are structuring a territorial garrison of Aisla in an extremely complex region, with a large diffusion of ALS families and with large family contexts facing a violent illness and who need to stay on the net. A pride and a path that continues and which, piece by piece, makes up a puzzle. Alongside a battle, the one against ALS, which goes beyond fear and anger. A team effort where the impossible becomes concrete reality. A commitment made that puts people at the centre”.
Aisla Lazio acts as an interlocutor for political decision makers and as a point of reference for over 600 families. “In Lazio – highlights Rizzitano – there is no pathology register that would give an account of the numbers and resources necessary, even from a social point of view, to deal with the disease and be of support to families, but also for research. Not having a pathology registry does not allow researchers to cross-reference data to take certain research paths.For this reason, Aisla has put in place a pathology registry, in the various regions, which at regional and national level provides data for a reality of the situation and not an estimate. In addition to “building a network among our families – continues the president – we make available some services which are above all presence and attention, listening, information, after the terrible stages of diagnosis, and a series of supports such as transport to and from treatment centers and the ‘relief operations’ with which we finance each family according to the patient’s needs. Through the Aisla vehicles of the Lazio section, but also with private transport, we finance the desire to go out and still be part of the community of our patients, not only for a need related to treatment, but also for moments of joy, conviviality, opportunities for socializing that we all needed.”
The newly formed Governing Council, in office for the next 3 years, also counts two patients among its 8 directors: Stefano Litta as secretary, Irene Cipriani as vice president, Andrea Pitton as treasurer and the directors Claudio Cresta, Enzo Proietti, Stefano Rossi and Donatella Serafini. To stay updated on the section’s activities, it is possible to follow the Facebook page (facebook.com/aislalazio/), while to arrange an interview, it is suggested to send an e-mail to [email protected]. “In the year of the celebrations for our fortieth anniversary – comments the national president Fulvia Massimelli – there could not be a more special gift than that of making the association’s presence in Lazio and in our capital official. Today I saw a cohesive group of young volunteers , decided and determined. This is the ‘sense’ of Aisla’s history itself. A history that has always made the community a method of thought and action.
Also present at the meeting was the Nemo Roma clinical centre, which is based in the Gemelli hospital and was born out of the will of the patient associations. The centre, with its multidisciplinary team – recalls a note – is highly specialized in the treatment of neuromuscular diseases. Under the direction of Mario Sabatelli, in particular, the adult area has always been at Aisla’s side: just think that over 600 ALS patients were followed up in the last year alone, including many from outside the region. “In recent years – remarks the neurologist Amelia Conte – great strides have been made in clinical care. Not only that, scientific research can count on two precious tools strongly desired by Aisla: the National ALS Registry and the Biobank. We want to be the hands that reach out to you and contrast, together with yours, the disease”.
Also present at the meeting were the national secretary of Aisla, Pina Esposito, the national councilor Francesca Genovese and the national management committee of the association. Paradoxically, concludes Rizzitano, “we are working to close the association”. In other words, the hope is that, thanks to effective treatment, “there will no longer be a need for the 64 offices and thousands of volunteers. In all contexts of Aisla, squares, assemblies and days, there is the grit, the joy of to believe that, at a certain point, there will also be a cure for this disease. Whoever embarks on the journey must know that he is not alone”, even in this hope.