{"id":33682,"date":"2023-09-04T12:27:03","date_gmt":"2023-09-04T10:27:03","guid":{"rendered":"https:\/\/progettotouring.it\/radiotouring104\/?p=33682"},"modified":"2023-09-04T12:32:55","modified_gmt":"2023-09-04T10:32:55","slug":"i-faber-quartet-al-lido-della-polizia-in-concerto-solidale-per-la-fondazione-chops","status":"publish","type":"post","link":"https:\/\/progettotouring.it\/radiotouring104\/2023\/09\/04\/i-faber-quartet-al-lido-della-polizia-in-concerto-solidale-per-la-fondazione-chops\/","title":{"rendered":"I Faber Quartet al Lido della Polizia in concerto solidale per la Fondazione Chops"},"content":{"rendered":"

\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 non solo”.<\/strong><\/em> Parla cos\u00ec Manuela, madre del piccolo Mario che, a gennaio di quest’anno viene a conoscenza della malattia genetica molto rara che ha colpito il suo bambino<\/strong>. Questa patologia prende il nome di “Sindrome di Chops” ed \u00e8 quasi sconosciuta, considerato che conta appena 13 casi descritti nella letteratura medica e circa 30 in tutto il mondo. Appena venuti a conoscenza della malattia, disponendo di pochissime informazioni ed altrettanti aiuti aiuti, i genitori di Mario hanno deciso di lanciare una raccolta fondi che ha riscosso un grande successo, al punto che, nel giro di poche settimane, hanno deciso di istituire una fondazione avente come scopo la promozione ed accelerazione della ricerca scientifica per una cura contro questa sindrome rarissima.
\nTutte le energie al momento sono indirizzate alla ricerca e allo studio della sindrome Chops ma, in futuro, l\u2019idea \u00e8 quella di allargare l’impegno anche verso tante altre malattie rare. 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.
\nCon questo solidale ed importante fine, gioved\u00ec 7 settembre, a partire dalle ore 20:30, presso il lido della Polizia di Stato, sito a Pentimele, si terr\u00e0 l\u2019evento “Apericena sotto le stelle con concerto”<\/strong>, evento benefico in cui parte del ricavato sar\u00e0 devoluto dal locale alla Fondazione CHOPS ETS.
\n\u201cPer la prima volta –<\/em>\u00a0 dice Manuela –\u00a0<\/strong> abbiamo associato anche la musica proprio nella nostra citt\u00e0 a Reggio Calabria.\u201d Ospiti d\u2019onore, infatti, saranno i membri del gruppo \u201cFaber Quartet\u201d.<\/p>\n

<\/em>Per sostenere la fondazione, qui: UN AIUTO PER MARIO E NON SOLO<\/a><\/strong><\/em><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

\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…<\/p>\n","protected":false},"author":12,"featured_media":33683,"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":[17082,21081,17083,21078,21077,1389,21079,21080],"class_list":["post-33682","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-home","category-news","category-reggio-calabria","tag-fondazione-chops-ets","tag-apericena-sotto-le-stelle","tag-dott-ssa-manuela-mallamaci","tag-faber-quartet","tag-lido-polizia","tag-pentimele","tag-piccolo-mario","tag-sindrome-chops"],"yoast_head":"\nFaber Quartet in concerto solidale per la Fondazione 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