{"id":14454,"date":"2023-03-09T06:00:38","date_gmt":"2023-03-09T11:00:38","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=14454"},"modified":"2023-10-05T11:39:45","modified_gmt":"2023-10-05T15:39:45","slug":"romans-story-living-with-ppp2r5d","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2023\/03\/09\/romans-story-living-with-ppp2r5d\/","title":{"rendered":"Roman’s Story Living with PPP2R5D"},"content":{"rendered":"

What do you do for fun?<\/b><\/h3>\n

Cook together, play with our dogs, nature walks, and we enjoy our weekly family outing for coffee\/hot chocolate.<\/p>\n

Tell us about the biggest hardship you face.<\/b><\/h3>\n

The unknown, not knowing what my sons future will look like and what challenges will come our way.<\/p>\n

What motivates you to participate in research?\u00a0<\/b><\/h3>\n

To learn more about Jordan’s Syndrome and to help others.<\/p>\n

What is one question you wish researchers could answer about this genetic change?<\/b><\/h3>\n

How we can help mitigate any hardships or issues our son may face.<\/p>\n

What have you learned about your or your child\u2019s genetic condition from other families?<\/b><\/h3>\n

That even though they may share a lot of similarities, they are all unique.<\/p>\n

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?<\/b><\/h3>\n

Participate in research, connect with other families.<\/p>\n","protected":false},"excerpt":{"rendered":"

Learn more about Roman, a 2-year-old with PPP2R5D.<\/p>\n","protected":false},"author":18,"featured_media":14455,"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":[16],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/14454"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=14454"}],"version-history":[{"count":4,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/14454\/revisions"}],"predecessor-version":[{"id":14688,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/14454\/revisions\/14688"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/14455"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=14454"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=14454"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=14454"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}