2023-06-16 17:24:53
The ‘My Voice’ campaign in support of the ‘Voice for Purpose’ technological project can also count on the support of Unicoop Florence, Pistoia headquarters, which has always supported the territorial headquarters of the Italian Amyotrophic Lateral Sclerosis Association (Aisla) Pistoia. The ‘Voice for purpose’ project, coordinated by NemoLab, the first technological research center dedicated to responding to the need for autonomy of people with neuromuscular diseases, aims to support all people with ALS (amyotrophic lateral sclerosis) who lose own voice due to the disease by accessing a library of voices, contained right in the technological platform.
“The loss of the ability to speak – says Daniela Morandi, Aisla Pistoia contact person – is one of the main sources of suffering, both for the patient and for his family. In the context of ALS, the creation of a voice library – he continues – represents an innovative opportunity that will allow patients to record their voice from the early stages of diagnosis and to receive a donated voice free of charge, chosen from among the most suitable ones, to insert in your tablet, pc or eye pointer”.
Communicating – Aisla explains in a note – is a fundamental act for anyone. An important aspect in the construction of identity and in defining one’s role within the family and social context. Relating with others becomes even more important when there is a need to express needs, direct the acts of care and self-determination. The tools of augmentative alternative communication (CAA) available today use electronically synthesized vocal registers but which give a metallic and impersonal tone of voice, which often creates distance, discomfort and communication difficulties.
“Generosity is a fundamental value that characterizes our community – declares Marco Leporatti, President of Coop Fi Partners in Pistoia – The ‘My Voice’ campaign represents a gesture of great generosity and we want to actively promote it throughout the region. We are proud to support this initiative and to give people affected by this disease a chance. Generosity – he adds – is what makes us human and allows us to make a difference in the lives of others”. The voiceforpurpose.com platform – recalls Aisla – collects a library of voices from which to choose the most suitable one among those donated by people of all over the world, but also accessible to those who still have the ability to speak and who, by recording their own voice, have the possibility of ‘saving it’ to be able to use it in the future, if the disease makes it necessary.
“Initiatives like today’s, which give value to the generosity of a community – underlines Luca Maria Munari, medical director of NemoLab – allow us to make known the enormous potential of technology at the service of the quality of life of people with ALS and neuromuscular diseases. This is the mission of our technological pole, which was born in the wake of 15 years of experience in the treatment and research of the Nemo clinical centres. It is the will to give value to those details that make the difference to a person’s life, with the awareness – he concludes – that extraordinary results can only be achieved together”.
The ‘Voice for Purpose’ project was born in the NemoLab voice laboratory, thanks to the partnership with Translated, a company specialized in the field of translation equipped with machine learning technology, Campus Bio Medico University of Rome, Nemo and Aisla clinical centres. The presentation event of the ‘My Voice’ project campaign was attended by: Marco Leporatti, president of Soci Coop Fi Pistoia headquarters; Silvia Mantero, director of the Pistoiese Health Society; Luca Maria Munari, Medical Director of NemoLab and Nemo Clinical Centres; Daniela Morandi, Aisla Pistoia contact person and Stefania Bastianello, Technical Director of Aisla Nazionale.
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