On the occasion of World Voice Day, on 16 April, the Italian Amyotrophic Lateral Sclerosis Association (AISLA) received 15,500 words from 125 people in support of the ‘voice bank’ for the ‘My Voice’ campaign, promoted by the same association to allow those with amyotrophic lateral sclerosis (ALS) to return to communicating with a human voice.
“It is concrete help for those who risk losing the ability to speak with their own voice due to illness which – explain Stefania Bastianello, technical director of Aisla, and Giordana Donvito, occupational therapist of Nemo Lab – is one of the reasons for greater suffering for people with ALS and their families.Currently, there are Alternative Augmentative Communication (CAA) tools such as the ocular communicator, which are essential to allow messages to be transferred.However, the electronically synthesized voice registers inside them give a tone of a metallic and impersonal voice that often creates distance and discomfort, a suffering that also undermines the very identity of the person, who does not recognize himself in these sounds”.
Specifically – reads a note – to restore a human voice to ALS patients, the My Voice campaign relies on the clinical experience on neuromuscular pathologies of the Nemo Clinical Centers and on the technology of Nemo Lab, a technological research hub, specialized for these pathologies. From this work, in partnership with the Campus Bio-Medico University of Rome, Dream on and Translated, a leading company in the linguistic services industry and pioneer of the symbiosis between linguists and artificial intelligence, the Voice for Purpose project was born. The technological platform takes care of creating a service dedicated to the preservation of the voice: a real ‘library of voices’. Indeed, on the initiative’s website, Voiceforpurpose.com, it is possible to find a catalog of expressive voices from which to choose the most suitable. Not only. When it is still possible, the person with ALS who still retains the ability to speak with his own voice, by accessing the platform can start an ‘archiving’ process, in order to use it in the future in case of need.
The 15,500 words that arrived in Aisla for the world day were donated by the people who work in Zambon. “The most beautiful way to celebrate this day is through concrete gestures – observes Fulvia Massimelli, national president of Aisla – For this I sincerely thank the team that has chosen to be alongside our community for this project. It is the testimony that when the research is at the service of the person’s need it is possible to build a society in which everyone feels an integral part, bringing their own contribution beyond the disease. This value contains all the meaning of today”.
Through the registration points, the ‘My Voice’ campaign, born at the end of 2022, acts as a spokesperson for those who do not have a voice, but who can regain it thanks to the voice banking project. The campaign sees two extraordinary testimonials: the actor and voice actor Pino Insegno, who strongly wanted the project, and the singer Ron, who has been alongside Aisla and the Sla community since 2004, donating his talent.
“I have been at the side of people with ALS for years, aware of the silent strength that these friends, whom I call giants, are able to demonstrate – recalls Ron, Aisla national councilor – It is incredible for me to know that what I have most precious, my voice, becomes a tool for telling life. The words of love of a man to his partner, or the words of a father who guides his children or those of gratitude towards his loved ones: all this is a real privilege. The voice will be able give color to joy and dignity to pain. I am happy that today, together with mine, another group of voices is added, many and all fundamental to give strength to these friends”.