ROMA (ITALPRESS) – The Rarementis ETS Foundation was presented in Rome, a project created to transform the direct experience of complex neurological disability into a structured commitment, open to the territory and able to reduce the solitude of families.
Rarementis ETS, founded by Giulia Fasanella, Vittorio Maio, Olga Cybulska and Andrea Sabbatini, respectively Co-Presidents and Vice-Presidents of the Foundation, draws origin from the encounter between two families who share daily the difficulties related to these pathologies and have chosen to transform their lives into a structured commitment.
The Foundation deals in particular with development and epileptic encephalopathies (DEE – Developmental and Epileptic Encephalopathies), a group of rare and serious diseases of neurodevelopment that mainly affect children in the first months or years of life. They are characterized by pharmaco-resistant epilepsy, regression of psychomotor development and intellectual disability.
These elements, together, significantly affect everyday life and the level of autonomy.
It is from here that Rarementis aims to develop interventions capable of supporting daily life and, at the same time, to build perspectives in the medium and long term, using the support of a high-profile Scientific Committee.
“We can’t cancel a diagnosis and we can’t promise healing, we can’t even illuminate that our life will return to being what we had imagined. But that doesn’t mean we can’t do anything. We can transform isolation into relationship. We can build a network. We can create opportunities for meeting and inclusion. We can help children and families access opportunities, services and paths that can effectively improve their quality of life
Rarementis was born for this, to transform an individual experience into a shared responsibility,” explained Vittorio Maio, co-founder of the Foundation.
In addition to social-assistance support, Rarementis aims to start a structured path aimed at “During and After Us”, intended as a progressive construction of autonomy and inclusion that starts from the present, extending its action also to access social, educational, cultural contexts and the working dimension in adult life.
«The After of Us is not necessarily the day when a parent will no longer be there. We could be old. We may simply no longer have the strength to ensure our adult children the assistance we provide to them today. And then we cannot wait that moment to ask where they will live, who will know them, what relationships they will have built, what they will do during their days. The future begins with the present” commented Giulia Fasanella, co-founder of Rarementis.
The presentation also spoke Barbara Funari, Councillor for Social Policies and Health of Rome Capital, Walter Veltroni, Honorary Supporter of the Foundation, and Massimiliano Maselli, Councillor for Social Inclusion and Services to the Person of the Lazio Region (with delegation to disability and Third Sector), who together with the founding members have the importance of building a synergistic network between families, institutions, professionals and Third Sector.
“The birth of the Rarementis Foundation – said the Councillor for Social Policies and Health Barbara Funari – reminds us how important it is for families not to face the challenges of disability, but to meet, share experiences and support each other. From the ability to network can create new opportunities, such as their project of a home for the After of Us which represents an important objective: to imagine together life paths that do not exhaust themselves in family care, but openspaces of independence and inclusion. As institutions we must accompany these experiences and collaborate with families because the ‘After of Noì is already built today, through links, trust and shared responsibilities”.
“I want to help Rarementis because in this foundation there is love for others, respect for the specialty of each creature, combined to affirm the right of each person to live a full life. Rarementis is love and protection, civil battle and feeling of solidarity”, commented Walter Veltroni, Honorary Supporter of the Foundation.
“I welcome the birth of this new reality with pleasure. Building an inclusive community means ensuring people with complex disabilities and their families listening, concrete support and life opportunities. It is essential to strengthen the collaboration between institutions, territorial services and realities of the Third sector, so that each person can be valued in his own uniqueness and no family must face the path of care and assistance alone” added Massimiliano Maselli, Councillor for Social Inclusion and Services to the Person of the Lazio Region.
During the meeting, the first operational projects on which the Foundation intends to undertake:
Relief Days: educational and recreational activities structured for children and young people with and without disabilities (and for their siblings), entrusted to qualified operators to offer families a time of real relaxation and welfare relief. The days will start from November.
Accessibility in public places: interventions dedicated to the introduction of Alternative Increase Communication (CAA) through panels with pictograms, adapted maps and digital tools in parks, libraries and cultural spaces.
Inclusive coworking space and active relief: an innovative model that combines work and care, alongside a coworking area for parents an educational and inclusive space for children.
-photo press office Fondazione Rarementis ETS-
(ITALPRESS).
