{"id":57187,"date":"2024-11-14T12:22:01","date_gmt":"2024-11-14T17:22:01","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2024\/11\/14\/il-viaggio-dei-pardos-con-naa15\/"},"modified":"2024-11-14T12:22:01","modified_gmt":"2024-11-14T17:22:01","slug":"il-viaggio-dei-pardos-con-naa15","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/it\/2024\/11\/14\/il-viaggio-dei-pardos-con-naa15\/","title":{"rendered":"Il viaggio dei Pardos con NAA15"},"content":{"rendered":"<p><em>Le risposte che seguono sono state originariamente scritte in spagnolo e tradotte utilizzando un servizio di terze parti.<\/em><\/p>\n<h3>Com&#8217;\u00e8 la vostra famiglia?<\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: I am Toto's mother with a mutation in GENE NAA 15\"><span class=\"Y2IQFc\" lang=\"en\">Sono la madre di Toto, che ha una mutazione nel gene NAA15.  <\/span><\/p>\n<p dir=\"ltr\" data-placeholder=\"Translation\" aria-label=\"Translated text\" data-ved=\"2ahUKEwj-276YyfeGAxXVMVkFHXc2DQ8Q3ewLegQIBRAU\"><em>Sono mamma di Toto con mutazioni nel GEN NAA 15.<\/em><\/p>\n<h3 class=\"p1\"><b>Ci parli della difficolt\u00e0 pi\u00f9 grande che deve affrontare.<\/b><\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwi7_uic88-IAxX0kYkEHTnwJWkQ3ewLegQICBAU\" aria-label=\"Translated text: His illness. His pathology prevents him from having a normal quality of life. His fragility caused by pharyngitis prevents him from enjoying the outdoors except when the weather is very nice. His low muscle tone prevents him from running in the garden When he is sick, he decompensates too quickly.\"><span class=\"Y2IQFc\" lang=\"en\">Il futuro di mio figlio.<\/span><\/p>\n<p dir=\"ltr\" data-placeholder=\"Translation\" aria-label=\"Translated text\" data-ved=\"2ahUKEwi8wfTfs72HAxXSmIkEHY2OAdkQ3ewLegQIBxAU\"><em>Il futuro di mio figlio.<\/em><\/p>\n<h3 class=\"p1\"><b><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-16089 size-medium alignleft\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-300x300.png\" alt=\"\" width=\"300\" height=\"300\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-1536x1536.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-2048x2048.png 2048w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/b><\/h3>\n<h3 class=\"p1\"><b>Cosa influisce sulla tua decisione di partecipare o meno alla ricerca?  <\/b><\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: I just haven't had the opportunity, I would like to\"><span class=\"Y2IQFc\" lang=\"en\">Non ne ho ancora avuto l&#8217;opportunit\u00e0, ma mi piacerebbe farlo.<\/span><\/p>\n<p><em>Non ho avuto l&#8217;opportunit\u00e0 di farlo, semplicemente, mi piacerebbe.<\/em><\/p>\n<h3 class=\"p1\"><b>Qual \u00e8 la domanda a cui vorresti che i ricercatori potessero rispondere su questo cambiamento genetico?<\/b><\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: What life expectations are there?\"><span class=\"Y2IQFc\" lang=\"en\">Quali sono le aspettative di vita?<\/span><\/p>\n<p><em>Che aspettative di vita hai.<\/em><\/p>\n<h3 class=\"p1\"><b>Che cosa avete appreso da altre famiglie riguardo alla condizione genetica vostra o di vostro figlio?<\/b><\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: I don't know any other family.\"><span class=\"Y2IQFc\" lang=\"en\">Non conosco nessun&#8217;altra famiglia.<\/span><\/p>\n<p><em>No conozco otra familia.<\/em><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-15175 size-medium alignright\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-300x300.png\" alt=\"\" width=\"300\" height=\"300\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-1536x1536.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-2048x2048.png 2048w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<h3 class=\"p1\"><b>Se potesse dare un consiglio a qualcuno a cui \u00e8 stata recentemente diagnosticata un&#8217;alterazione genetica nella sua famiglia, quale sarebbe?<\/b><\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: That everything can be achieved with therapy, patience and love.\"><span class=\"Y2IQFc\" lang=\"en\">Che tutto pu\u00f2 essere raggiunto con la terapia, la pazienza e l&#8217;amore.<\/span><\/p>\n<p><em>Che tutto possa avvenire con terapia, pazienza e amore.<\/em><\/p>\n<h3>In che modo <span class=\"notranslate\">Simons Searchlight<\/span> \u00e8 stata una risorsa per te e la tua famiglia?<\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwi7_uic88-IAxX0kYkEHTnwJWkQ3ewLegQICBAU\" aria-label=\"Translated text: By giving hope in this long journey\"><span class=\"Y2IQFc\" lang=\"en\">Ho trovato l&#8217;articolo interessante.<\/span><\/p>\n<p><em>Mi sembra interessante l&#8217;articolo.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Scopri la storia ispiratrice dei Pardo.<\/p>\n","protected":false},"author":28,"featured_media":49292,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[536],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/posts\/57187"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/comments?post=57187"}],"version-history":[{"count":0,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/posts\/57187\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/media\/49292"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/media?parent=57187"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/categories?post=57187"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/tags?post=57187"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}