Over the weekend, for the 17th National Amyotrophic Lateral Sclerosis (ALS) Day there are hundreds of unmissable events throughout Italy to support patients and their families. Breathtaking green night lights and solidarity stalls are the features of this event conceived, organized and promoted on September 14 and 15 by Aisla, the Italian Amyotrophic Lateral Sclerosis Association, with the high patronage of the President of the Republic and the patronage of the Ministry of Labor and Social Policies. The celebrations – as stated in a note – will open on Saturday morning, at the Festival of Philosophy, with the event promoted by the National Council of Notaries and the Notarial Council of Modena. During the event, in which Aisla is participating, the recent legal developments regarding the removal of social barriers, integration and the recognition of inviolable rights will also be explored.
“It is everyone’s duty – says Fulvia Massimelli, national president of Aisla – to work together to create a fair, supportive and accessible society. Only in this way can we guarantee that everyone, regardless of their abilities, can fully enjoy fundamental rights and contribute to the progress of our society. Hundreds of monuments will light up throughout Italy to testify to this commitment. It is the color of life that continues and renews itself”. Saturday 14th Septemberat sunset, thanks to the patronage of Anci, hundreds of monuments and municipalities will be lit up in green using a gelatin specifically designed to ensure energy savings. A symbolic gesture as a sign of solidarity and support for people with ALS and their families. The event will be kicked off at Palazzo Chigi, in the presence of the Honorable Maria Teresa Bellucci, Deputy Minister of Labor and Social Policies. “I want to be present – reads a note from the Deputy Minister – to show my closeness to all the people who are courageously fighting amyotrophic lateral sclerosis and their families. I take this opportunity to invite everyone to support research, it is of vital importance to guarantee increasingly advanced and above all effective treatments”.
Aisla, with its forty-year experience in providing assistance and promoting knowledge and increasing skills, invested over 70 thousand euros in 2023 alone to train 1,186 students and allocated 201 thousand euros in funding for scientific research. “People with ALS require complex assistance – explains Mario Sabatelli, president of the Aisla medical-scientific commission and clinical director of the Nemo Roma Center, adult area – It is essential to have an innovative and far-sighted care approach, assistance based on high-intensity and high-tech interventions. Today we look with hope to a future in which research can provide concrete answers for care. And the solidarity of people capable of putting themselves on the front line, like the Aisla volunteers, is a great heritage of humanity, which encourages not only families, but also the scientific community to move forward with hope”.
Sunday, September 15, National ALS Day, from Piazza San Lorenzo in Lucina in Rome at 11 am, the Fanfara a Cavallo della Polizia di Stato will perform a selection of songs that will end with the National Anthem by Mameli. “Music, we all know, is the universal language par excellence that has accompanied man since the dawn of time – comments the famous singer-songwriter Ron, testimonial of Aisla – Its communicative capacity goes beyond the limits of words, even when the words belong to different languages. But also when the words can no longer be pronounced, because a disease arrives that takes them away from you. Music is like life, it must be played together. And, together, it is the only possible way to face a disease like ALS.”
Also on Sunday, with the motto ‘a contribution paid with taste’, Aisla volunteers will be present in Italian squares to raise awareness of the disease and offer the product of the solidarity campaign with a prized Barbera d’Asti Doc and Docg Superiore, selected among the best 18 Asti wineries and rated with a score of 89 by the commission of experts. The funds raised will be donated to Operation Relief, which provides free support to families affected by ALS. Thanks to the initiative, Aisla, in 2023, provided services for a value of 604 thousand euros, including equipped transport, purchase or rental of aids, psychological support, home physiotherapy, support for accessible holidays and equipped beaches, as well as for the ‘Listening and consultancy center on ALS’, an essential point of reference for patients, family members and care staff with 18 specialists who, free of charge, in 2023, recorded 12,501 contacts and carried out 6,670 interventions.
“In Italy, informal care is the fundamental resource for society. Family, friends and volunteers are essential for ‘Community Welfare’. – observes Pina Esposito, national secretary of Aisla – Collaboration between the third sector and institutions is a necessary sharing to responsibly fuel a solidarity capable of offering concrete answers to the community. In this, our 300 volunteers are a concrete and generative example.” To contribute to the National ALS Day there is also the possibility of donating online on the solidarity shop (negoziosolidaleaisla.it). To support, even symbolically, the cause, the solidarity number 45580 is active. Further information on aisla.it, at the number 02 66982114 or at the e-mail address [email protected].
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