{"id":52935,"date":"2024-07-09T15:51:51","date_gmt":"2024-07-09T19:51:51","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2024\/07\/09\/de-reis-van-de-ramirezes-met-ppp2r5d\/"},"modified":"2024-07-18T11:45:55","modified_gmt":"2024-07-18T15:45:55","slug":"de-reis-van-de-ramirezes-met-ppp2r5d","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/nl\/2024\/07\/09\/de-reis-van-de-ramirezes-met-ppp2r5d\/","title":{"rendered":"De reis van de Ramirezes met PPP2R5D"},"content":{"rendered":"<h3>Hoe ziet jouw familie eruit?<\/h3>\n<p>We hebben vijf gezinsleden, 2 volwassenen en 3 kinderen. Wij komen uit Bucaramanga, Colombia. Lucia is een meisje en de oudste zus, Antonio is de PPP-kiddo en Juan is een baby die geboren is tijdens de COVID-19 pandemie.<\/p>\n<h3 class=\"p1\"><b>Wat doe je voor je plezier?<\/b><\/h3>\n<p class=\"p2\">We houden van zwemmen, hardlopen en verschillende sporten. We houden ook van de natuur, dus we gaan kamperen.<\/p>\n<h3 class=\"p1\"><b>Vertel ons over de grootste ontbering waar je mee te maken hebt.<\/b><\/h3>\n<p class=\"p2\">Begrip hebben voor Antonio en hem begeleiden in het proces zonder lasten te cre\u00ebren voor de andere twee broers en zussen.<\/p>\n<h3 class=\"p1\"><b><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-15116 alignleft\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091808\/PEOPLE_scientist-fem-laptop-300x300.png\" alt=\"\" width=\"288\" height=\"288\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091808\/PEOPLE_scientist-fem-laptop-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091808\/PEOPLE_scientist-fem-laptop-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091808\/PEOPLE_scientist-fem-laptop-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091808\/PEOPLE_scientist-fem-laptop-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091808\/PEOPLE_scientist-fem-laptop-1536x1536.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091808\/PEOPLE_scientist-fem-laptop-2048x2048.png 2048w\" sizes=\"(max-width: 288px) 100vw, 288px\" \/><\/b><\/h3>\n<h3 class=\"p1\"><b>Wat motiveert je om deel te nemen aan onderzoek?  <\/b><\/h3>\n<p class=\"p2\">Het is belangrijk om deel uit te maken van de oplossing en het is ook ons compromis met andere generaties.<br \/>\nJe onderdeel voelen van de groep en deel uitmaken van de gemeenschap die dezelfde doelen voor ogen heeft.<\/p>\n<h3 class=\"p1\"><b>Wat is \u00e9\u00e9n vraag waarvan je zou willen dat onderzoekers die konden beantwoorden over deze genetische verandering?<\/b><\/h3>\n<p class=\"p2\">Als we op een dag een geneesmiddel kunnen vinden.<\/p>\n<h3 class=\"p1\"><b>Wat heb je van andere families geleerd over de genetische aandoening van jou of je kind?<\/b><\/h3>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-15151 size-medium alignright\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092017\/PEOPLE_fem-child-helix-300x300.png\" alt=\"\" width=\"300\" height=\"300\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092017\/PEOPLE_fem-child-helix-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092017\/PEOPLE_fem-child-helix-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092017\/PEOPLE_fem-child-helix-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092017\/PEOPLE_fem-child-helix-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092017\/PEOPLE_fem-child-helix-1536x1536.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092017\/PEOPLE_fem-child-helix-2048x2048.png 2048w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<p class=\"p2\">Specifiek, enkele therapie\u00ebn die hem zouden kunnen helpen.<\/p>\n<h3 class=\"p1\"><b>Als je \u00e9\u00e9n advies zou mogen geven aan iemand bij wie onlangs de genetische verandering in jouw familie is vastgesteld, wat zou dat dan zijn?<\/b><\/h3>\n<p class=\"p2\">Heb veel vertrouwen en geduld.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ontdek het inspirerende verhaal van de Ramirezes.<\/p>\n","protected":false},"author":28,"featured_media":52925,"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":[271],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts\/52935"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/comments?post=52935"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts\/52935\/revisions"}],"predecessor-version":[{"id":52940,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts\/52935\/revisions\/52940"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/media\/52925"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/media?parent=52935"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/categories?post=52935"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/tags?post=52935"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}