{"id":21188,"date":"2021-02-09T11:07:53","date_gmt":"2021-02-09T11:07:53","guid":{"rendered":"https:\/\/sando.com\/actualidad\/fundacion-sando-book-syndrome-phelan-mcdermid-lo-inesperado"},"modified":"2024-10-29T10:38:52","modified_gmt":"2024-10-29T10:38:52","slug":"fundacion-sando-book-syndrome-phelan-mcdermid-lo-inesperado","status":"publish","type":"post","link":"https:\/\/www.sando.com\/en\/actualidad\/fundacion-sando-book-syndrome-phelan-mcdermid-lo-inesperado","title":{"rendered":"The Sando Fundaci\u00f3n backs the publication of the Phelan-McDermid Syndrome Association\u2019s book, \u201cLo inesperado\u201d"},"content":{"rendered":"<h2><em>The book has been written to raise awareness of functional diversity.<\/em><\/h2>\n<h2><em>The presentation will be on 23 April, coinciding with International Book Day.<\/em><\/h2>\n<p>&nbsp;<\/p>\n<p>The Phelan-McDermid <a href=\"https:\/\/22q13.org.es\/\" target=\"_blank\" rel=\"noopener noreferrer\">Syndrome Association<\/a> and the<a href=\"https:\/\/fundacionsando.com\/\" target=\"_blank\" rel=\"noopener noreferrer\"> Sando Fundaci\u00f3n<\/a> have signed a collaboration agreement to publish the first edition of the book \u201cLo inesperado\u201d , written to raise awareness on functional diversity.<\/p>\n<p>\u201cLo inesperado\u201d, written by Pilar Grande and illustrated by Mar\u00eda Rodr\u00edguez, aims to raise awareness and convey a close image of this rare disease, Phelan-McDermid syndrome.<\/p>\n<p>This illustrated book, the first edition of which will be presented to the public on 23 April, on International Book Day, seeks to promote social and institutional awareness of the disease with likeable characters and rhyming texts created to raise awareness in children and adult readers alike.<\/p>\n<p>All the funds raised from the book\u2019s sale will go to Phelan-McDermid Syndrome research, a genetic condition considered a rare disease. Also called 22q13 Deletion Syndrome, it is caused by the deletion of the terminal end of chromosome 22, i.e., by the genetic mutation of the DNA sequence or a mutation of the SHANK3 gene.<\/p>\n<h3>Other projects<\/h3>\n<p>The Sando Fundaci\u00f3n and the Phelan-McDermid Syndrome Association have collaborated for several years on projects to raise awareness of this disease. During 2019 and 2020, Sando Fundaci\u00f3n participated in advertising a <a href=\"https:\/\/www.sando.com\/en\/fundacion-sando-signs-an-agreement-to-promote-knowledge-of-the-phelan-mcdermid-syndrome\/\" target=\"_blank\" rel=\"noopener noreferrer\">travelling photographic exhibition<\/a> of the artist David Palac\u00edn around Spain.<\/p>\n<p>The Phelan-McDermid Syndrome Association is a non-profit organisation declared to be of public interest, founded in 2013 by parents and relatives of people affected by this syndrome. Its main activity focuses on improving people\u2019s quality of life affected by Phelan-McDermid Syndrome and their families and promoting and assisting scientific research to disseminate knowledge of this pathology in medical and scientific communities and society as a whole.<\/p>\n<p>The Sando Fundaci\u00f3n is a non-profit organisation dedicated to organising and developing social initiatives in the cultural, social, employment, health and safety, research, historical-artistic heritage or employment, and socio-cultural integration of vulnerable people.<\/p>\n<p>Below is an excerpt from \u201cLo inesperado\u201d that captures the spirit of the book:<\/p>\n<p><em>\u201cSometimes things do not turn out as we had planned &#8230; However, unexpected turns show us worlds we would not have known following the usual path. <\/em><\/p>\n<p><em>The pair of grasshoppers in our story will discover this, a surprise that will lead them to discover new paths and meet fellow travellers they could never have dreamed of &#8230;\u201d.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"The book has been written to raise awareness of functional diversity. The presentation will be on 23 April, coinciding with International Book Day. &nbsp; The Phelan-McDermid Syndrome Association and the Sando Fundaci\u00f3n have signed a collaboration agreement to publish the first edition of the book \u201cLo inesperado\u201d , written to raise awareness on functional diversity&#8230;. <a class=\"view-article\" href=\"https:\/\/www.sando.com\/en\/reemplazos\/conacon-sando\">View Article<\/a>","protected":false},"author":2,"featured_media":2909,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[980,979],"tags":[1044,1095,1047,1066,986,1050,1302],"tax_brand":[],"tax_services":[],"tax_location":[],"class_list":["post-21188","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-comunicacion-comunicacion-en","category-communication","tag-buenas-practicas","tag-cultura-sanitaria","tag-fundacion-sando","tag-responsabilidad-social-corporativa","tag-rsc","tag-rse","tag-social-responsability"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Fundaci\u00f3n Sando apoya libro sobre S\u00edndrome Phelan-McDermid<\/title>\n<meta name=\"description\" content=\"Fundaci\u00f3n Sando respalda el nuevo libro &quot;Lo inesperado&quot; de 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