From the scientific research that announces the efficacy of tofersen in a rare genetic form of the disease, to the testimony of Aldo, with the moving visual poem “Days at the window”. A life story of Aldo’s race, as well as of the 6 thousand families that run with him every day. Unmissable, the traditional Thalas sailing which will see families as protagonists on Sunday 19 June, the sick and the volunteers on the waves of the Marina di Salivoli in Piombino. There are many initiatives byItalian Association of Amyotrophic Lateral Sclerosis (Aisla) on the occasion of the World day 2022 dedicated to the disease.
Promoted by the international federation of patient associations, International Alliance of Als / Mnd Associations, of which Aisla is a member as an Italian member, the World Day – a note recalls – is celebrated every year on June 21, on the summer solstice. The choice of date expresses, in fact, the hope for a turning point as regards the search for the causes, treatments and effective cures to finally defeat the disease.
A common goal that reminds us how much ‘we’ make the difference. “Global Day 2022 – says Fulvia Massimelli, national president of Aisla – must focus on the great steps taken in research and support for the care of people with ALS. I am thrilled at the idea of seeing many people and families again after these years of pandemic. Illness will never drive us away and the initiatives promoted by Aisla are concrete proof that together no one will ever be able to hinder us. Our hope is, and will always be, without borders and without limits ”, she assures us.
Published in ‘Nature Communication’, a recent Italian-American scientific study provides a forecast on the frequency and prevalence of ALS in the world over the next 24 years: in 2040 the average increase in the number of patients in the world will be 32%. In particular, women will be the most affected by the increase (+ 40%). According to the study, cases in Italy will rise from 1,800 to 2,300 per year. And if it is true that there is currently no treatment capable of curing ALS, it must be said that research is increasingly active and promising.
“The Alliance – says Calaneet Balas, CEO of the International Alliance of Als / Mnd – is concerned about people affected by ALS during the conflict in Ukraine. We are working closely with our stakeholder partners in affiliated organizations, industry and NGOs to ensure we keep the lines of communication open and help in the best possible way. ” The International Alliance, which this year celebrates its first 30 years of activity, promotes Global Day on social networks through the hashtag #ALSMNDwithoutborders. A curiosity: one of the ways to join the Day is to bring with you a blue cornflower. It is a very rare wildflower. It blooms only once a year, between May and September, and its deep blue color makes it beautiful. It is said that ‘Via Via, come away from here, nothing more binds you to these places, not even these blue flowers’ were precisely the cornflowers honored by Paolo Conte in his workhorse.
There are many initiatives promoted by Aisla again this year throughout the Italian territory. A kermesse of face-to-face initiatives, but also online such as the webinar of 22 June “Path for alternative augmentative communication in the person with ALS” which focuses attention on the role and value that the communication tool assumes for the person. World ALS Day, therefore, brings with it messages of hope but also of concrete concreteness. An example is the three-year memorandum of understanding with the Polytechnic of Turin, thanks to which Aisla starts a collaboration relationship to support the quality of life of people with SLA. A way to reiterate a key concept: behind the time that passes, there is always a person who lives and this must never be forgotten. To follow the detailed program: https://www.aisla.it/global-day/.
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