Amyotrophic lateral sclerosis, the “library of voices” is born to give speech to those who no longer have it

MILAN — Giving a voice to those who no longer have one. On the occasion of World Voice Daythe Zambon company, a pharmaceutical multinational oriented towards the development of innovative therapies to improve patients’ health and quality of life, announces its support for AISLA – Italian Amyotrophic Lateral Sclerosis Association and stands alongside the My Voice campaignpromoted by the Association itself, designed to allow all people with ALS (Amyotrophic lateral sclerosis) to return to communicating with a human voice. For the occasion, the people of Zambon donated their voice to people affected by ALS. 125 entries for a total of 15,500 words that will increase the “voice bank” made available to patients. The initiative was also extended to the companies that are part of OpenZonesthe scientific campus created by Zambon completely dedicated to health, located on the outskirts of Milan.

No more metallic and impersonal voices. It is a concrete help for those who risk losing the ability to speak with their own voice due to the disease, one of the reasons of greatest suffering for people with ALS and their families. Currently, there are tools for Augmentative Alternative Communication (CAA) such as the ocular communicator, essential to allow the transfer of messages. However, the electronically synthesized vocal registers within them give a metallic and impersonal tone of 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.

Tools that make everyday life easier. “Our responsibility as a company operating in the health sector – said Elena Zambon, president of Zambon – is also to take care of patients and their families who bear the burden of care to make their lives better, not only with therapeutic solutions, but also with care tools that make daily life easier. “Giving” one’s voice to those who are less fortunate, I think it’s a small gesture that can help patients with ALS interact with others, finding a little serenity in relationships. We are grateful to AISLA – concluded Zambon – for having created this initiative: we are happy and proud to support them”.

The voice library, which also includes your own. Specifically, to give voice to ALS patients, the My Voice campaign relies on clinical experience on neuromuscular pathologies of NeMO Clinical Centers and to the technology of NeMO Lab, a technological research center specialized in these pathologies. From this work, in partnership with Campus Bio-Medico University of Rome, Dream on And Translated, leading company in the language services industry and pioneer of the symbiosis between linguists and artificial intelligence, the project was born Voice for Purpose, a global consortium to restore human and expressive voices to those forced to use speech synthesizers. The technological platform takes care of creating a service dedicated to the preservation of the voice: a real “voice library”. On the initiative’s website, Voiceforpurpose. comin fact, it is possible to find a catalog of expressive voices from which to choose the most suitable one. Not only that, 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.

When research is at the service of need. “The most beautiful way to celebrate this day is through concrete gestures. – declares Fulvia Massimelli, National President of AISLA – For this I sincerely thank the Zambon team, which has chosen to be alongside our community for this project. It is the testimony that when 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. All the meaning of today’s day is contained in this value”.

The testimonials: Pino Insegno and Ron. Through the registration points, the My Voice campaign, born at the end of 2022, thus becomes 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 very famous testimonials: the actor and voice actor Pino Insegno, who strongly wanted the project, and Ron, who has been alongside AISLA and the ALS community since 2004. “I have been by the side of people with ALS for years, aware of the silent strength that these friends, whom I call giants, are able to demonstrate – said Ron, AISLA national councilor, who continues – it is incredible for me to know that what I have most precious , my voice, becomes a tool to tell Life. The words of love from 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 to 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 giving strength to these friends”.

What is Amyotrophic Lateral Sclerosis. Also known as “Lou Gehrig’s disease”, from the name of the American baseball player who was affected by it, or “Charcot’s disease”, from the French neurologist who was the first to define it at the end of the 19th century – it is a neurodegenerative disease typical of adulthood characterized by progressive muscle paralysis, caused by the degeneration of motor neurons (the cells responsible for the contraction of the voluntary muscles primarily responsible for movement, but also for other vital functions such as swallowing, phonation and respiration) in the primary motor cortex, in the corticospinal tract and in the spinal cord. The main symptoms are muscle weakness, muscle stiffness, paralysis (affecting the whole body), swallowing and breathing problems, spasticity, muscle wasting, cramps, weight loss, etc. ALS affects about 1-3 people in 100,000 population each year, and 5-7 people in 100,000 live with the disease, a figure that is increasing mainly due to improvements in diagnosis. In Italy there are an estimated 5,000/6,000 patients suffering from ALS and there are 1,000 more cases each year. Life expectancy after diagnosis is on average 2-5 years.

What is AISLA. It is a non-profit association founded in 1983 with the aim of becoming the national reference entity for the protection, assistance and treatment of ALS patients. AISLA was recognized in 1999 by the Ministry of Health. The daily commitment is to ensure that the competent structures take care of people affected by ALS in an adequate and qualified way. The Association has more than 2,300 members, 64 territorial branches present in 19 regions. It employs 300 volunteers, 12 collaborators and a Medical-Scientific Commission made up of 19 experts. The work of AISLA is concentrated in four areas of activity: information, assistance, research and training.

What is NeMO Lab. It is the first Italian hub for the development of highly specialized technological research programs and projects, which respond over time to the complex needs of those experiencing neurodegenerative and neuromuscular pathologies, such as ALS, SMA and neuromuscular dystrophies. The project was born in the wake of the experience in taking care of people with neuromuscular and neurodegenerative diseases of the NeMO Clinical Centers and joins the vocation of doing social enterprise of the Gino Mattarelli Consortium (Cgm). Inaugurated in April 2021 at the ASST Grande Ospedale Metropolitano Niguarda in Milan and located on the upper floor of the NeMO Clinical Center in Milan, the hub is an incubator of skills, values ​​and vision, to experiment with a new model of knowledge, which generates concrete impact on the community of reference and in highly complex care contexts. NEMO Lab consists of 10 high-tech laboratories and authorized clinics for the specialist branches of neurology, physical rehabilitation medicine, pulmonology, ophthalmology, orthopedics and traumatology; it has so far involved 837 patients, collaborates with 20 technical-scientific partners and currently boasts 60 active projects and services.

What is Zambon SpA. It is a modern pharmaceutical multinational founded in Vicenza in 1906, whose history is based on the values ​​of an Italian family business committed to improving the lives and health of patients. It has 2,474 collaborators worldwide, is present in 23 countries in Europe, America and Asia, and can count on its production plants in Italy, Switzerland, China and Brazil. Thanks to its innovative and quality products marketed in 87 countries, Zambon SpA in 2022 recorded a turnover of 765 million euros. In addition to being well established in three historical therapeutic areas – respiratory diseases, pain management and urinary tract infections – Zambon is focused on developing treatments for neurodegenerative diseases such as Parkinson’s disease and rare diseases such as cystic fibrosis and other pathologies.