“This time is when we need to give value to the concept of community, a prerequisite for social cohesion and civic commitment. The common good, therefore, as a mission commitment that starts from the front line defense of the community of people with ALS, to open up with courage and be close to the needs of a changing society “. This is the message reaffirmed by isolates nell’National Assembly of Members which took place on the evening of 12 July
The institutional appointment was also the occasion – reports a note – to announce one great technological challenge for 2022: the three-year and inexpensive memorandum of understanding that the association has signed with the Polytechnic of Turin. A technological challenge that arises from the common goal of capitalizing know-how and experience, but which above all represents a vision. A signature that expresses the intent to think technology at the service of the community of patients with amyotrophic lateral sclerosis. “This initiative is part of the many activities that the University carries out to increase its impact on society, in particular to contribute with research to improve the lives of those in most difficulty – comments Claudia De Giorgi, vice rector for the quality, welfare and equal opportunities of the university – ours is a school that increasingly aims to train citizens, not just technicians, therefore raising awareness of certain problems is essential to make our students more aware and attentive “.
With a operating surplus of 342 thousand euros, Aisla closes the balance with 1,863,642 and presents it dedicating it to all 288 volunteers. “In the story of our activities carried out in 2021 and future goals, the community is the nerve center of all the actions undertaken. People with ALS and their loved ones represent the pillar of the association’s very existence, a fabric that must be nourished by an asset that goes beyond the material and beyond the contingencies “, declares Fulvia Massimelli, national president of Aisla.
“There is an increasing need – continues Massimelli – to feel part of a community and the years of the pandemic have continued to confirm this. From this sense of belonging and the needs of people and their families, Aisla works to involve all its stakeholders. Concrete responses and activities implemented are the expression of how the association is part of that Third Sector which is increasingly a pillar for our society and for public welfare “.
To speak are the numbers: 12,152 contacts of the Listening Center; 7,634 people trained from 2009 to today; from 7 training modules to 51 in 2021. Recalling the commitment to the Nemo Clinical Centers – of which 50% of the patients treated have ALS – Aisla reiterates how fundamental it is to build paths capable of developing the skills of multidisciplinary assistance along the entire path of the disease, with particular attention to the empowerment of the sick person, awareness and self-determination with respect to therapeutic choices.
Of the more than 100 proposals received by the AriSla Foundation in 2021, 7 were selected for a total investment of € 874,950. Not only. Also in 2021 the Selex Group has chosen to finance the research by allocating an additional 50,000 euros to Aisla for the continuation of the National Sla Biobank project launched in 2019, thus arriving at a total donation which, to date, amounts to 407,740 euros.
But it is also thanks to the active synergies with the banking foundations that Aisla was able to activate public welfare actions. In 2021, together with the Mediolanum Foundation, Aisla presented Baobab, the first study in the world that explains the emotional effects of ALS in children. A study that highlights the critical issues related to the “children of ALS patients”, forced to face different and complex emotional challenges every day.
The Assembly ended with the appointment for the weekend of 17 and 18 September 2022. On that night, between Saturday and SundayItaly will once again turn green. Thanks to the support of Anci (National Association of Italian Municipalities) and the mayors who want to join the initiative, hundreds of monuments will light up green, precisely to keep alive the hope of a cure that can soon defeat the disease. On Sunday 18 September, however, the appointment is in over 150 Italian squares where it will be possible to participate in the XV National ALS Day. Made possible, again this year, thanks to the contribution of the Piedmont Region, the Barbera d’Asti and Monferrato Wines Consortium, the Alessandria-Asti Chamber of Commerce, the Cassa di Risparmio di Asti Foundation and the Industrial Union of the Province of Asti, over 300 volunteers in all the main Italian squares they will be involved in the promotion of bottles of Barbera d’Asti Docg with the aim of raising funds thanks to the “A contribution paid with taste” campaign.