Prader Willi syndrome (PWS) is a rare genetic disorder: due to an alteration in chromosome 15, those affected suffer from hypothalamic-pituitary abnormalities associated with severe hypotonia, hyperphagia, and have learning disabilities and behavioral disorders or severe psychiatric problems.
The Prader Willi Lombardy Association has been working to help them for 30 years, carrying out activities, projects and interventions that succeed in socially including individuals with PWS, both children and adults. The registered office is in Monza, while the operational one is in Asso, the host municipality of the facility we support that will host ASSO.COM: the two-year experimental project to support the well-being of people with PWS from 0 to 60 years old and their families thanks to specifically trained educators and operators.
In order to meet their specific needs, the ASSO.COM project aims to involve them in days of alternating leisure and workshop moments, always at the center of something new to discover. It is with this in mind that the project's activities are born: lab-experiences based on playfulness, emotional involvement, motivation and sharing; a closlieu workshop, equipped according to the Arno Stern method where color and instinct guide creativity; a gymnasium for teens and adults; a DIY workshop where they can make handcrafted and fair trade products; a photography workshop; a laundry; a honey extraction workshop where they can become familiar with bees and their importance for our planet; and a vegetable garden where they can socialize and meet while taking care of herbs, flowers and vegetables. Finally, outdoor exploration with walks in search of mountain and lake landscapes in which the surrounding area is rich.
All these spaces can be used during training weekends, summer vacations or, as for the activity in the gymnasium, at any time of the year, albeit with the supervision of specialized staff depending on the age groups: for children from 0 to 11 years old, the presence of family members will be required, while people from 12 to 60 years old can do the various workshops only with the support of the operators. In this way ASSO.COM is committed to making its facilities accessible to everyone and as often as possible, so as to become a point of reference for those living with PWS that, to date, has been lacking.
Association: Prader Willi Lombardia ODV
Intended beneficiaries: People with Prader Willi syndrome and families
Contribution: up to €110,000.00
Period: January 2023 - December 2024