2023-06-21 12:15:21
There are many initiatives of the Italian Amyotrophic Lateral Sclerosis Association (Aisla) on the occasion of the 2023 World Day dedicated to the disease. SLA Global Day is celebrated on 21 June but there are numerous solidarity events before, during and after the key day. Among the appointments, the traditional Thalas Mare&Vento sailing, now in its 15th edition. With the Thalas – reads a note – the embrace of the waves and the wind accompanied the two days (17 and 18 June) in Marina di Salivoli in Piombino. Born from the commitment of the Aisla Piombino section, the sailing, the undisputed Italian symbol of the SLA Global Day, has opened a program full of events that are taking place throughout the Italian territory: scientific insights, yoga lessons, walks, concerts and much more (www.aisla.it/global-day).
Promoted by the International Federation of Patient Associations, of which Aisla is a member as an Italian member, World ALS Day (whose official hashtag is #ALSMNDWithoutBorders) is celebrated every year on the day of the summer solstice, 21 June. A date chosen to underline the hope that on this day of change, a turning point may also come as regards the search for the causes, treatments and effective cures to defeat ALS.
“Let’s celebrate these days together with eyes of hope but also with awareness in our hearts – says Fulvia Massimelli, president of Aisla – Let’s embrace the positive energies of the sea in the sense of community and renewed respect for each other. Hope in research is , and will always be, without borders and without limits. Just like our hope, Thalas represents the overcoming of all limits. This same hope, however, today must also take the form of a shared responsibility for an increasingly adequate taking charge as a guarantee and protection of the quality of life of every family which, in Italy, is forced to live with a disease such as ALS”.
And it is with this spirit that, on Sunday 18 June, the Elianto catamaran – an inclusive vessel built specifically for people with disabilities – set sail, followed by a swarm of sailboats. Over 200 volunteers, family members and supporters who went on the radar to the port of the Island of Elba, in the Cavo area, where it was possible for everyone, even people with ALS, to dive into the crystal clear waters. The raising of the Italian and Aisla flags kicked off, accompanied by the Galantara Marchin Band and the parade of majorettes and, thanks to the support of Rugby Piombino, it was possible for the carriages to board. It is the sense of freedom that becomes the protagonist in this encounter with the immensity of the sea; a concept, that of freedom, which is linked to being outside the boundaries and spaces that the disease imposes.
If the ultimate goal is always to raise awareness, Aisla does so without ever losing sight of the general well-being of the community. And this is how the event saw, among the protagonists, also the music and harmony of the show by the Gaudats Junk Band which places the reuse of waste at the center of its art, thus raising awareness on the issue of environmental protection and recycling.
Numerous local institutions took part in the initiative: the director of the Local Health Authority of Elba Fabio Chetoni, the councilor for education and social policies Simona Cresci, the director of the Valli Etrusche Health Society Laura Brizzi, the mayor of Piombino Francesco Ferrari, the director Liberty Magona Lino Iallorenzi. Sponsored by the Tuscany Region, the Municipality of Piombino, the North West Tuscany Local Health Authority and the Etruscan Valleys Health Society, the event was made possible thanks to dozens of volunteers, shipowners, doctors and health professionals who made themselves available to the ALS community , as well as the precious collaborations with the Marina di Salivoli Mooring Cooperative, the Mare Oltre Onlus Foundation, the management of the Marina di Salivoli Piombino Tourist Port and the Yacht Club Marina di Salivoli, concludes the note.
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