{"id":8632,"date":"2025-12-05T18:58:06","date_gmt":"2025-12-05T17:58:06","guid":{"rendered":"https:\/\/apaiser.org\/newsite\/?p=8632"},"modified":"2025-12-05T19:09:48","modified_gmt":"2025-12-05T18:09:48","slug":"journee-des-associations-neurosphinx","status":"publish","type":"post","link":"https:\/\/apaiser.org\/newsite\/2025\/12\/05\/journee-des-associations-neurosphinx\/","title":{"rendered":"Journ\u00e9e des associations NeuroSphinx"},"content":{"rendered":"\n<p>Hasards du calendrier, c&rsquo;est le 5 d\u00e9cembre, journ\u00e9e mondiale du b\u00e9n\u00e9volat, que la fili\u00e8re maladies rares Neurosphinx, regroupant les centres de r\u00e9f\u00e9rence C-Mavem, Marep et Marvu, orangisanisait sa journ\u00e9e des associations. L&rsquo;occasion de mettre en avant les t\u00e9moignages et exp\u00e9riences des membres et b\u00e9n\u00e9voles des associations de patients.<\/p>\n\n\n\n<p>APAISER S&amp;C \u00e9tait repr\u00e9sent\u00e9e par 8 de ses membres, et a vu la r\u00e9\u00e9lection de Mado Gilanton comme repr\u00e9sentante des associations au comit\u00e9 de pilotage de la fili\u00e8re NeuroSphinx, en compagnie de C\u00e9lia Cardoso, pr\u00e9sidente de l&rsquo;association Tintamarre.<br><\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img fetchpriority=\"high\" decoding=\"async\" width=\"768\" height=\"384\" src=\"https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/12\/journeeneuro2.jpg\" alt=\"\" class=\"wp-image-8634\" srcset=\"https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/12\/journeeneuro2.jpg 768w, https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/12\/journeeneuro2-300x150.jpg 300w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><\/figure>\n\n\n\n<p><em>Mado Gilanton et C\u00e9lia Cr\u00e9tolle, coordinatrice de NeuroSphinx<\/em><\/p>\n\n\n\n<p><\/p>\n\n\n\n<p>Le th\u00e8me choisi pour la journ\u00e9e par les associations \u00e9tait \u00ab&nbsp;Vivre ses r\u00eaves&nbsp;\u00bb et il a \u00e9t\u00e9 d\u00e9clin\u00e9 par 3<br>tables rondes&nbsp;:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Table ronde : R\u00eaves en mouvement\u00a0<\/strong>: se d\u00e9passer, avancer, s\u2019inventer\u2026communiquer autour<br>d\u2019un r\u00eave\u00a0dont l\u2019objectif a \u00e9t\u00e9 de montrer comment le r\u00eave prend forme et devient une<br>trajectoire, un chemin, un d\u00e9fi ou m\u00eame un projet de vie.<br>Avec l\u2019intervention sur leurs projets de Floriane (Influenceuse handicap &#8211; parentalit\u00e9) et<br>Charlotte (projet \u00ab\u00a0Cap sur Rome\u00a0\u00bb) atteintes de dysraphisme et de Luc atteint de<br>d\u2019exstrophie v\u00e9sicale qui apr\u00e8s deux travers\u00e9es de l\u2019Atlantique, est maintenant reporter<br>d\u2019images aupr\u00e8s des la communaut\u00e9 maladies rares.<br><br><\/li>\n\n\n\n<li><strong>Table ronde \u00ab\u00a0Oser, r\u00eaver, vivre\u00a0:<\/strong> quand le r\u00eave devient r\u00e9alit\u00e9\u00a0: accompagner les envies des<br>grands et des petits\u00a0: avec l\u2019intervention de Hugues, atteint d\u2019un Chiari qui nous \u00e0 parl\u00e9 de<br>son r\u00eave d\u2019aller un jour au Japon avec un film tr\u00e8s po\u00e9tique et \u00e9mouvant sur ses petits pas<br>jour apr\u00e8s jour pour retrouver le mouvement, la marche, l\u2019\u00e9quilibre.<br><br><\/li>\n\n\n\n<li><strong>La troisi\u00e8me table ronde \u00ab&nbsp;R\u00eaves en sc\u00e8ne&nbsp;:<\/strong> quand l\u2019art, le mouvement et la cr\u00e9ation transcendent le quotidien&nbsp;\u00bb&nbsp;: Claire atteinte de syringomy\u00e9lie et Chiari nous a racont\u00e9 comment elle a pu malgr\u00e9 des troubles de la m\u00e9moire une troupe de th\u00e9\u00e2tre amateur. Diana atteinte de Chiari a expos\u00e9 son parcours de la d\u00e9couverte de la danse pour traiter ses douleurs jusqu\u2019\u00e0 la cr\u00e9ation de l\u2019association \u00ab&nbsp;Traitement de la douleur par le mouvement.<br><\/li>\n<\/ul>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-9d6595d7 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><div class=\"wp-block-image\">\n<figure class=\"alignright size-full\"><img decoding=\"async\" width=\"400\" height=\"596\" src=\"https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/12\/journeeneuro3.jpg\" alt=\"\" class=\"wp-image-8635\" srcset=\"https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/12\/journeeneuro3.jpg 400w, https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/12\/journeeneuro3-201x300.jpg 201w\" sizes=\"(max-width: 400px) 100vw, 400px\" \/><\/figure>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\"><div class=\"wp-block-image\">\n<figure class=\"alignleft size-full\"><img decoding=\"async\" width=\"400\" height=\"596\" src=\"https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/12\/journeeneuro4.jpg\" alt=\"\" class=\"wp-image-8636\" srcset=\"https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/12\/journeeneuro4.jpg 400w, https:\/\/apaiser.org\/newsite\/wp-content\/uploads\/2025\/12\/journeeneuro4-201x300.jpg 201w\" sizes=\"(max-width: 400px) 100vw, 400px\" \/><\/figure>\n<\/div><\/div>\n<\/div>\n\n\n\n<p>Un grand merci en particulier \u00e0 Tiphaine Piron pour l&rsquo;organisation de cette journ\u00e9e.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Hasards du calendrier, c&rsquo;est le 5 d\u00e9cembre, journ\u00e9e mondiale du b\u00e9n\u00e9volat, que la fili\u00e8re maladies rares Neurosphinx, regroupant les centres de r\u00e9f\u00e9rence C-Mavem, Marep et Marvu, orangisanisait sa journ\u00e9e des associations. L&rsquo;occasion de mettre en avant les t\u00e9moignages et exp\u00e9riences des membres et b\u00e9n\u00e9voles des associations de patients.<\/p>\n","protected":false},"author":1,"featured_media":8633,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[35],"tags":[],"class_list":["post-8632","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actus"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Journ\u00e9e des associations NeuroSphinx - Apaiser S&amp;C<\/title>\n<meta name=\"description\" content=\"Hasards du calendrier, c&#039;est le 5 d\u00e9cembre, journ\u00e9e mondiale du b\u00e9n\u00e9volat, que la fili\u00e8re maladies rares Neurosphinx, regroupant les centres de r\u00e9f\u00e9rence C-Mavem, Marep et Marvu, orangisanisait sa journ\u00e9e des associations. 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