{"id":214335,"date":"2017-06-05T11:46:46","date_gmt":"2017-06-05T15:46:46","guid":{"rendered":"https:\/\/dev.totemweb.design\/macommunaute\/communiques\/u24872-un-geste-pour-les-personnes-atteintes-de-spina-bifida-et-d-hydrocephalie\/"},"modified":"2022-11-06T17:09:31","modified_gmt":"2022-11-06T22:09:31","slug":"u24872-un-geste-pour-les-personnes-atteintes-de-spina-bifida-et-d-hydrocephalie","status":"publish","type":"communiques","link":"https:\/\/dev.totemweb.design\/macommunaute\/communiques\/u24872-un-geste-pour-les-personnes-atteintes-de-spina-bifida-et-d-hydrocephalie\/","title":{"rendered":"Un geste pour les personnes atteintes de spina-bifida et d\u2019hydroc\u00e9phalie"},"content":{"rendered":"<div>\n<div>\n<p>\u00a0<\/p>\n<p><strong>Montr\u00e9al, le 1er juin 2017<\/strong> \u2013 L\u2019Association de spina-bifida et d\u2019hydroc\u00e9phalie du Qu\u00e9bec (<a title=\"\" href=\"http:\/\/www.spina.qc.ca\/\" target=\"_new\" rel=\"noopener\">ASBHQ<\/a>), pour marquer le d\u00e9but du Mois national de sensibilisation au spina-bifida et \u00e0 l\u2019hydroc\u00e9phalie, annonce le lancement de sa campagne 2017.<\/p>\n<p>\u00a0<\/p>\n<p>Compte tenu du manque de structures d\u2019accompagnement aux personnes atteintes de spina-bifida, cette campagne a pour but d\u2019amasser des fonds pour la cr\u00e9ation de groupes de soutien pour ces personnes, leurs familles et leurs proches. Ces groupes de soutien pourraient prendre diff\u00e9rentes formes\u00a0: rencontres virtuelles ou physiques sur des th\u00e8mes allant de la g\u00e9n\u00e9tique jusqu\u2019\u00e0 des \u00e9changes sur des bons trucs dans le quotidien \u2013 tels que adaptation de v\u00e9los pour enfants, activit\u00e9s \u00e0 faire en famille, et adaptation de maison \u2013 ou sur tout sujet propos\u00e9 par les personnes concern\u00e9es.<\/p>\n<p>\u00a0<\/p>\n<p>\u00ab Les personnes atteintes de spina-bifida et d\u2019hydroc\u00e9phalie vivent des probl\u00e9matiques multiples et parfois complexes. Elles ont besoin de pouvoir \u00e9changer avec des personnes qui connaissent leurs d\u00e9fis et qui peuvent leur apporter un soutien r\u00e9el\u00a0\u00bb explique Laurence Leser, directrice de l\u2019Association. \u00ab\u00a0L\u2019ASBHQ met l\u2019accent sur l\u2019implication active des personnes atteintes de spina-bifida et d\u2019hydroc\u00e9phalie dans le d\u00e9veloppement de ces groupes de soutien \u00bb pr\u00e9cise Laurence.<\/p>\n<p>\u00a0<\/p>\n<p>Pour cette campagne, l\u2019ASBHQ a deux porte-paroles aux profils diff\u00e9rents\u00a0: Martin Veilleux et Connie Ettore. Martin Veilleux, atteint de spina-bifida et aveugle depuis 2007, est un jeune homme combattant qui a r\u00e9ussi \u00e0 d\u00e9passer son handicap en se consacrant \u00e0 diverses activit\u00e9s, telles que le Crossfit. Connie Ettore est la m\u00e8re d\u2019une brave jeune fille qui est d\u00e9c\u00e9d\u00e9e en 2015 suite \u00e0 des complications li\u00e9es au spina-bifida.<\/p>\n<p>\u00a0<\/p>\n<p>Pour mieux conna\u00eetre nos porte-paroles \u2013 <a title=\"\" href=\"https:\/\/www.youtube.com\/watch?v=_cy5YoSIztY\" target=\"_new\" rel=\"noopener\">Martin<\/a> et <a title=\"\" href=\"https:\/\/www.youtube.com\/watch?v=T3Eg15kg93w\" target=\"_new\" rel=\"noopener\">Connie<\/a> \u2013 et leur engagement, visitez <a title=\"\" href=\"https:\/\/www.youtube.com\/channel\/UCwOaaeIA2SLoCFVZ6-GiSPQ\" target=\"_new\" rel=\"noopener\">notre page YouTube<\/a>. Pour faire un don, cliquez <a title=\"\" href=\"https:\/\/www.canadahelps.org\/fr\/organismesdebienfaisance\/lassociation-de-spina-bifida-et-dhydrocephalie-du-quebec-q\/\" target=\"_new\" rel=\"noopener\">ici<\/a>.<\/p>\n<p>\u00a0<\/p>\n<p><strong>\u00c0 propos de l\u2019ASBHQ<\/strong><\/p>\n<p>L\u2019Association de spina-bifida et d\u2019hydroc\u00e9phalie du Qu\u00e9bec (ASBHQ) est un organisme \u00e0 but non lucratif fond\u00e9 en 1976 \u00e0 Montr\u00e9al, qui a pour mission d\u2019am\u00e9liorer la qualit\u00e9 de vie de ses membres, des personnes atteintes de spina-bifida ainsi que leurs proches et leurs familles, en offrant du soutien et de l\u2019information. Elle travaille aussi \u00e0 sensibiliser la population et \u00e0 faire de la pr\u00e9vention.<\/p>\n<p>\u00a0<\/p>\n<p>-30-<\/p>\n<p>\u00a0<\/p>\n<p><strong>Pour renseignements:<\/strong><\/p>\n<p>\u00a0<\/p>\n<p>Anne Edimo<\/p>\n<p>Charg\u00e9e de projets<\/p>\n<p>\u00a0<\/p>\n<p>Association de spina-bifida et d\u2019hydroc\u00e9phalie (ASBHQ)<\/p>\n<p>T\u00e9l\u00e9phone\u00a0: 514-340-9019<\/p>\n<p>T\u00e9l\u00e9phone (sans frais)\u00a0: 1-800-567-1788<\/p>\n<p>@\u00a0: info@spina.qc.ca<\/p>\n<p><a title=\"\" href=\"http:\/\/www.spina.qc.ca\" target=\"_new\" rel=\"noopener\">www.spina.qc.ca<\/a><\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>L\u2019Association de spina-bifida et d\u2019hydroc\u00e9phalie du Qu\u00e9bec (ASBHQ), pour marquer le d\u00e9but du Mois national de sensibilisation au spina-bifida et \u00e0 l\u2019hydroc\u00e9phalie, annonce le lancement de sa campagne 2017.<\/p>\n<p><a href=\"https:\/\/dev.totemweb.design\/macommunaute\/communiques\/u24872-un-geste-pour-les-personnes-atteintes-de-spina-bifida-et-d-hydrocephalie\/\">read more<\/a><\/p>","protected":false},"author":1538,"featured_media":379508,"comment_status":"open","ping_status":"closed","template":"","thematiques":[],"regions":[],"class_list":["post-214335","communiques","type-communiques","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v19.6 - 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