{"id":33599,"date":"2023-09-01T17:53:51","date_gmt":"2023-09-01T15:53:51","guid":{"rendered":"https:\/\/progettotouring.it\/radiotouring104\/?p=33599"},"modified":"2023-09-02T18:07:16","modified_gmt":"2023-09-02T16:07:16","slug":"reggio-calabria-evento-solidale-a-pentimele","status":"publish","type":"post","link":"https:\/\/progettotouring.it\/radiotouring104\/2023\/09\/01\/reggio-calabria-evento-solidale-a-pentimele\/","title":{"rendered":"Reggio Calabria: evento solidale a Pentimele"},"content":{"rendered":"<p style=\"text-align: justify\"><em>\u201cLa fondazione <strong>Chops Malattie Rare<\/strong> \u00e8 nata il 13 maggio 2023 ed \u00e8 una realt\u00e0 molto giovane creata dopo la famosa raccolta fondi, tuttora attiva, \u2018Una raccolta per Mario e non solo\u2018. <\/em>A parlare \u00e8 <strong>Manuela<\/strong> che a gennaio del 2023, viene a conoscenza della malattia genetica molto rara che ha colpito suo figlio, il piccolo <strong>Mario<\/strong>. Si tratta della sindrome Chops, patologia quasi sconosciuta che conta solo 13 casi descritti in letteratura medica e circa 30 in tutto il mondo.<\/p>\n<p style=\"text-align: justify\"><em>\u201cAppena venuti a conoscenza della malattia, avendo pochissime informazioni e pochi aiuti, siamo partiti con una raccolta fondi che \u00e8 andata molto bene. Nel giro di poche settimane abbiamo deciso di istituire una fondazione con lo scopo di promuovere ed accelerare la ricerca scientifica per una cura contro la sindrome rarissima. Se non facciamo noi genitori qualcosa difficilmente ci sar\u00e0 uno sforzo da qualche altra parte\u201d. <\/em>Tutte le energie al momento sono indirizzate alla ricerca e allo studio della sindrome <strong>Chops<\/strong> ma in futuro l\u2019idea \u00e8 quella di occuparsi ed interessarsi anche di tante altre malattie rare. <em>\u201cSpero che la nostra iniziativa possa servire da stimolo per altri genitori in difficolt\u00e0 che vivono una situazione simile\u201d.<\/em><\/p>\n<p style=\"text-align: justify\">Una fondazione unica al mondo nata dall\u2019idea di sole due famiglie che hanno unito le forze per reperire le risorse economiche al fine di accelerare la ricerca. <em>\u201cCi sono purtroppo tantissime malattie rare<\/em> \u2013 conclude Manuela \u2013 <em>Al momento diamo supporto morale e psicologico alle famiglie al cui interno vi sono casi di malattie rare\u201d.<\/em><\/p>\n<p style=\"text-align: justify\">Gioved\u00ec 7 settembre a partire dalle ore 20:30, presso il lido della<strong> Polizia di Stato<\/strong> a <strong>Pentimele<\/strong> si terr\u00e0 l\u2019evento \u2018Apericena sotto le stelle con concerto\u2018. Il locale devolver\u00e0 parte del ricavato alla <strong>Fondazione CHOPS ETS. <\/strong><em><strong>\u201c<\/strong>Abbiamo organizzato in questi ultimi mesi tantissimi eventi sparsi per l\u2019Italia. Per la prima volta abbiamo associato anche la musica proprio nella nostra citt\u00e0 a <strong>Reggio<\/strong> <strong>Calabria<\/strong>. Invitiamo tutti coloro che hanno a cuore la vita di persone nate con patologie rare. Siamo i primi al mondo ad intraprendere questo percorso partito da <strong>Reggio<\/strong> <strong>Calabria<\/strong> che coinvolge tutto il mondo con il solo interesse di aprire una nuova strada di ricerca che possa aiutare le famiglie in difficolt\u00e0. Aiutateci a crescere\u201d.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u201cLa fondazione Chops Malattie Rare \u00e8 nata il 13 maggio 2023 ed \u00e8 una realt\u00e0 molto giovane creata dopo la famosa raccolta fondi, tuttora attiva, \u2018Una raccolta per Mario e&hellip;<\/p>\n","protected":false},"author":8,"featured_media":33600,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[921,196,140],"tags":[17082,21032,395,236],"class_list":["post-33599","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-home","category-news","category-reggio-calabria","tag-fondazione-chops-ets","tag-chops-malattie-rare","tag-polizia-di-stato","tag-reggio-calabria"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Reggio Calabria: evento solidale a 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