International Camp for Young People Affected by the Williams Syndrome
Project location: ITALY, Cervarezza, Reggio Emilia
Project start date: August 2010 - Project end date: August 2010
Project number: 2010-21
Beneficiary: ASS ITAL WILLIAMS SYNDROME
It sets as its goal to help young people with WS understand that their fears are unfounded, and they can face challenges just like able-bodied people: tha Association wants to demonstrate that, with the help of experienced staff, young WS People can face challenges and overcome them, prove themselves to be capable of doing and thereby increasing their self-esteem.
Williams syndrome (SW) is a rare genetic disorder (affecting one child in 10,000), characterized by mental retardation of mild or medium degree. In the overwhelmingly majority of WS children cases do not lead an independent live because their disabilities make them avoid problems and difficulties of practice social relations which are fundamental importance to promote their social integration.
In accordance with European policies, which tend to overcome the diversity of all kinds (male / female, citizen / foreigner, able / disabled) the project started with the idea of giving an opportunity to young people from all over Europe, with the common characteristic of being carriers of the Williams syndrome, to try experiences that they could not otherwise experience in a multicultural context, with the support of tutors who can encourage and support in dealing with the project activities.
The condition of persons with disabilities is very different depending on the country of origin but they all share, compared with non-disabled peers, difficulties to access a range of experiences necessary for their mental and physical development.
Travel too with a person who must accompany them, is difficult for them. Parents can only entrust them to expert hands that know the needs of these children.
They are characterized by extreme sociability and friendliness but are often unable to perform certain acts of daily life that can ensure their independence and autonomy.
With projects of individual national associations and with this project the association intends to improve the every day life of these children, and make them realize even if they have a genetic syndrome, they can do things that others do.
The activities to be carried out in the camp are not unusual in themselves, but become exceptional if proposed to kids who seldom or never have the opportunity to test themselves.
The project aims at achieving the following:
- Let children leave their families for a short time (psychological autonomy);
- Make them realize they can do things that they could not even imagine;
- Encourage them to share their experiences with children from other Countries, facilitated by the fact that they will be divided in four teams (each team will have one member per Country). In addition there will be daily moments of exchange and reflection;
- Fostering a spirit of camaraderie and serenity, respecting some basic rules for the good functioning of the camp;
- Increasing their personal autonomy, by tiding the room and participating in various activities, respecting the rules, managing the open spaces, cooking pizza for certain evenings;
- Increasing their self-esteem: realizing that they can react positively to their mood challenges.
At the end of the camp, tutors of every nation will write a report for families on the behaviour of children and their developments in the camp, pointing to the achievements, the positive aspects encountered and the most critical areas.
Over the next years, children will join a group of mail exchange, to ensure that they continue to keep in contact with each other, increasing their mutual understanding.
The Italian Association for the Williams Syndrome is an organization that works since 1996 for assisting the families of people affected by this disease. Born under the patronage of the Sovereign Military Order of Malta it's aim is to follow the families to face the medical, legal and social aspect connected to this disease. During the first ten years of activity, the Association concentrated itself in informing people about the syndrome and about the importance of an early diagnosis.
Following the changes to the statute during the Assembly held in Rome January 10, 1998 the Italian Association Syndrome Williams has become a non-profit social organization (NPO) as required by Legislative Decree 4 Dec. 1997, published in the Official Bullettin (Gazzetta Ufficiale) No. 1 2 January 1998.
The aims of the association are:
• Promote and disseminate knowledge about Williams Syndrome;
• Promote and coordinate scientific research projects on the Syndrome;
• Coordinate through its Scientific Committee the researches on Williams syndrome in national institutes avoiding the overlap of economic resources;
• Collect, coordinate and disseminate research results at national and international level through scientific publications published by AISW;
• Translate into Italian foreign publications;
• Promote educational programs;
• Drawing up protocols for genetic and medical diagnostic of the Williams syndrome;
• Organize regular scientific meetings and compare the results of the research on the syndrome;
• Promote and maintain contacts with associations in foreign countries;
• Organize regular meetings for patients, families and rehabilitators.