To communicate is to live. This is the strong message with which Aisla, together with NemoLab and the Nemo Clinical Centers, kicked off yesterday the My Voice campaignin the historic setting of the Teatro Tirso de Molina in Rome, to tell the importance of continuing to give a voice to people with ALS, which is lost due to the disease. An evening full of emotions led by Pino Insegno and Ron, testimonial of the initiative, whose voices have been able to tell the magic of a project capable of merging science and solidarity. Patient communities, researchers, institutions, technology experts and supporting partners, together on the eve of International Disability Day, which is celebrated today all over the world, to remember what it means to focus on the fundamental rights of people considered most fragile and to invite all to be part of a new vision of society in which the reciprocity of the gift becomes a founding value and resource for all.
“Donating your voice is not only a gesture of solidarity but also an act of faith. It is believing in the possibility that research and science can help improve the quality of life of the community of people with ALS today and think about a cure for this disease tomorrow – declare the President of Aisla, Fulvia Massimelli and the president of the Clinical Centers Nemo, Alberto Fontana – It is only when scientific skills are merged with the needs and expectations of patients that great results can be achieved. This is why technology must be capable of serving the common good, starting from listening to needs and sharing everyone’s desire for life, going beyond the limits of illness. Here is contained all the meaning of today’s celebrations, in which we want to tell that it is essential to guarantee everyone’s right to make their voices heard “.
“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 – says Ron, former Aisla national councilor -. And know that what I have most precious, mine voicemay become tool to tell the words of love of a man to his woman, or the words of a father who guide his children or those of gratitude towards loved ones, it is a real privilege. Voice that will be able to give color to joy and dignity to pain Knowing that you can give voice to the strength of these friends is an extraordinary thing and I know that many like me will give it”.
There loss of the ability to speak in one’s own voice, in fact, constitutes one of the reasons of greater suffering for the person with ALS and for his family members. And if the tools of augmentative alternative communication (CAA) available today, such as the ocular communicator, are essential to allow messages to be transferred, the electronically synthesized vocal registers inside them give a metallic and impersonal tone of voice that often creates distance and discomfort . Today technology – it was reiterated during the evening – comes to the aid of people experiencing the disease, with the possibility of keeping their voice by recording it or accessing a voice bank / voice banking that can be created thanks to all those who want donate your own.
“The voice is an extraordinary tool, with a thousand potentials and infinite facets – says Pino Teach, actor, voice actor – and for those who, like me, have always used the voice to tell great stories, even through others, can only stop faced with the possibility of putting it at the service of those who have lost their voice due to a disease such as ALS. that belong to all of us. And as I always say, you don’t need to have a good voice, you need good intentions“.
A human voice, therefore, to restore soul and identity in the relationship which, by necessity, is mediated by technological communication devices. And for this reason, from a scientific point of view, the “My Voice” campaign – details a note – makes use of the expertise of NemoLab, the technological research hub dedicated to neuromuscular diseases. And the theme of the voice is studied in one of its 10 research laboratories which has among its objectives that of creating a service dedicated to the preservation of the voice. The Voice for Purpose project was born from this challenge, thanks to the precious partnership with the Campus Biomedical Hospital and Translated – a leading company in the linguistic services industry and pioneer of the symbiosis between linguists and artificial intelligence – with the support of Helpicare, a specialized company within the CAA.
The project, in fact, makes available to people with ALS the most advanced speech synthesis technologies through the dedicated Voiceforpurpose.com platform, which offers a library of expressive voices from which to choose the most suitable one among the voices that people from all over the world will want to donate. And when the person still has the ability to speak with his own voice, by accessing the platform he can start the process aimed at “saving” his own voice and which he can record supported by the research team, to have the personal speech synthesis model, where disease will cause the need. Donors who access the portal can easily contribute to increasing the library of items that will be available to patients.
Sharing the values of this new adventure, the My Voice campaign is launched thanks to the support of the initiative’s partners, present on stage: National Amateur League; Rotaract District 2031; Sapio Group; Vivisol: Easy Labs; Tiscali. Their invaluable support and commitment in promoting the message of the gift of the voice is the beginning of a solidarity contest that bears witness to the desire for life. To support the goals of My Voice: Giving the Voice back to people with ALS! | Gift Network. To learn more about the campaign Campagna My Voice (aisla.it).
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