Creating Inclusive Environments for People with Prader-Willi Syndrome: An Extra-curricular-based Program in the U.S.A. and a Community-based Program in Costa Rica
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Prader-Willi Syndrome (PWS) is a rare genetic disorder with two notable manifestations: mild to moderate mental retardation and a constant, insatiable hunger. Many people in the United States and throughout the world have never heard of and do not understand this syndrome. Further, many countries lack the resources for the diagnosis of PWS and the provision of support services for those affected by the syndrome and their families. The purpose of this paper is to address the need for more knowledge on PWS by providing a theoretical framework, a review of the literature about PWS and two projects that focus on the value of inclusion for people with PWS. The projects stem from two different gaps, or needs, in the universal PWS system for inclusion. The first project focuses on the need for inclusion of children with PWS into mainstream extra-curricular activities. The proposed solution, “Putting the Pieces Together: Understanding Prader-Willi Syndrome,” is an interactive program designed to educate non-PWS children in the United States about the syndrome in order to promote acceptance, and thereby a higher probability of inclusion children with PWS. The second project, “Starting a chapter of the International Prader-Willi Syndrome Organization in Costa Rica,” focuses on the need to establish chapters of the International Prader-Willi Syndrome Organization in all countries in order to ensure inclusion into the PWS network for all people affected by the syndrome. This project specifically identifies a process for starting a chapter in Costa Rica, including an outline of tasks, and a cultural analysis of Costa Rica. These projects serve to spread knowledge of the syndrome, which will increase inclusion and acceptance of people with PWS into society and improve the quality of life for everyone involved.