09/02/2021
The Phelan-McDermid Syndrome Association and the Sando Fundación have signed a collaboration agreement to publish the first edition of the book “Lo inesperado” , written to raise awareness on functional diversity.
“Lo inesperado”, written by Pilar Grande and illustrated by María Rodríguez, aims to raise awareness and convey a close image of this rare disease, Phelan-McDermid syndrome.
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.
All the funds raised from the book’s 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.
The Sando Fundación and the Phelan-McDermid Syndrome Association have collaborated for several years on projects to raise awareness of this disease. During 2019 and 2020, Sando Fundación participated in advertising a travelling photographic exhibition of the artist David Palacín around Spain.
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’s 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.
The Sando Fundación 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.
Below is an excerpt from “Lo inesperado” that captures the spirit of the book:
“Sometimes things do not turn out as we had planned … However, unexpected turns show us worlds we would not have known following the usual path.
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 …”.
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