After the success of ‘The meeting with Pistoiese art’ last week, the marathon of events promoted by the Italian Amyotrophic Lateral Sclerosis Association (Aisla) for World ALS Day continues in Tuscany. Yesterday an in-depth study was held organized by the Participation Committee of the Local Health Authority of Tuscany Center with the lawyer from the Aisla legal office Alessandro Fabbri. Objective, to underline the importance of guaranteeing the right to non-verbal communication. During the meeting, after greetings from the health director of the ASL Toscana Centro Simona Dei, a round table was held with the participation of various associations, for the occasion the president of Aisla Firenze Barbara Gonella shared the patients’ point of view. This is a theme addressed in the documentary film ‘With a blink of an eye’, broadcast last night on Rai 3 and available for viewing on Rai Play. In the docufilm, created by Libero Produzioni in collaboration with Rai Documentari and with the patronage of Aisla, the Tuscan artist Drusilla Foer leads an intense dialogue with wives, partners, children and sisters of people with ALS.
World ALS Day, also known as Global Day, is celebrated every year on the summer solstice – June 21st – and is promoted by the International Federation of Patient Associations, the International Alliance of ALS/MND Associations. Just as the solstice represents a turning point, this date brings with it a message of hope for research into the causes, treatments and cures of ALS. In the month of June – reports a note – numerous events and meetings take place all over the world to raise public awareness of the disease. With the official hashtag of the day, #ALSMNDWithoutBorders, the aim is to overcome cultural barriers and demonstrate that physical frailty does not equate to weakness. Each event represents an important opportunity to raise awareness on the topic of ALS.
Aisla Firenze’s gala evening, Thursday 20 June at Villa Chellini, sold out in just a few hours – we read – An event that combines elegance, refined food and a noble purpose. On Saturday 22 June, at the Marina Port of Salivoli, a concert will be held with blues, rock and pop music with instruments made from recycled material. The Gaudats, the first Italian junk band that only plays self-built instruments with recycled materials, will be the protagonists of this one-of-a-kind evening. With the patronage of the Tuscany Region, the Municipality of Piombino, the Coast Guard, the Local Health Authority of North West Tuscany and the Valli Etrusche Health Society, on Sunday 23 June – the note details – the “Thalas, the embrace between sea and wind” sets sail, a experience of sailing at sea with over 200 boats that will welcome families, volunteers and people with ALS: a real gathering for dozens of families arriving from all over Italy and now in its 17th edition, it symbolizes the importance of union and solidarity . The national anthem of Mameli will start the sailing, accompanied by the Galantara Marchin Band and the parade of majorettes.
The Tuscan marathon will reach its conclusion on Friday 28 June in Ponsacco, where all football fans will have the opportunity to attend the ‘Partita del Cuore’ at the municipal stadium. The players who wrote the history of Ponsacco and Pisa Calcio will compete in a friendly match: an opportunity to relive the emotions of football from the past, with the participation of local glories.
In Tuscany there are estimated to be almost 400 people with ALS. For years, Aisla has been present in various provinces, including Arezzo, Florence, Livorno, Massa-Carrara, Lucca, Pistoia, Prato, Pisa, Grosseto and Siena, with the main objective of assisting and supporting families who find themselves facing the disease – concludes the note – The Association offers advice and information on available health services, support in processing bureaucratic procedures and organizes help groups, which facilitate the exchange of emotions and experiences between patients’ families, creating a network of support. The association also provides services such as the home distribution of medicines and the collection of medical prescriptions, thanks to the support of organizations such as Angeli in Moto and the Red Cross. Home physiotherapy and speech therapy services and Hydrokinesitherapy, a unique treatment currently only offered in Florence, are available to improve patients’ quality of life. To participate and have more information on Aisla’s initiatives and services in Tuscany: https://www.aisla.it/dove-siamo/toscana/
