{"id":185,"date":"2020-09-11T11:01:13","date_gmt":"2020-09-11T18:01:13","guid":{"rendered":"https:\/\/hadleyhope.scarabmedia.com\/?page_id=185"},"modified":"2020-09-22T08:21:13","modified_gmt":"2020-09-22T15:21:13","slug":"nov-update","status":"publish","type":"page","link":"https:\/\/hadleyhope.com\/nov-update\/","title":{"rendered":"Nov. Update"},"content":{"rendered":"<h2>\n\t\tNov. Update\n\t<\/h2>\n\t<p>This Thanksgiving season, the Hadley Family has a lot to be thankful for:<\/p>\n<p>We would like to sincerely thank everyone that came out to support our 5<sup>th<\/sup>\u00a0annual Harvest of Hope Dinner!\u00a0 The night was very special, with great food, wonderful entertainment, and terrific supporters!\u00a0 The warmth and support of everyone in the room was truly overwhelming, and we cannot thank you enough.\u00a0 It was a huge success.\u00a0 We tried to keep the evening light, and had some great news to share with everyone.\u00a0 Here\u2019s some highlights:<\/p>\n<ul>\n<li>Chris Corcoran of the Medford City Council issued a proclamation, announcing October as Niemann Pick Disease Awareness Month!\u00a0 We are thankful to the mayor and city council for helping raise awareness of this disease.<\/li>\n<li>It\u2019s been 2 years since starting the Cyclodextrin treatments via IV infusion, and almost 1 year since the injections, and the kids are doing great!\u00a0 The physicians continue to see very little, if any, decline in Peyton, and Kayla is still not showing any outward signs of NPC disease!<\/li>\n<li>We are applying to the FDA to amend our treatment protocol, and allow for the kids to start to be able to do their weekly 8 hour infusions at home!\u00a0 This would obviously put a lot less stress on the family, especially the kids!<\/li>\n<li>And\u2026.No more trips to Oakland!! \u00a0Yes, we were able to find a pharmacy locally that could make the drug for us, so we had our first injection last week here in MEDFORD!\u00a0 We\u2019ll miss Oakland (OK, not really), but we are very happy to not have to drive there every two weeks for treatments.\u00a0 It was wearing on everyone, so we are thrilled at this news!<\/li>\n<\/ul>\n<p>To see the latest video update on our family and treatments, please click on the top video on our website:\u00a0\u00a0<a href=\"https:\/\/hadleyhope.com\/\">https:\/\/hadleyhope.com<\/a><\/p>\n<p>Again, thank you to everyone that continues to support our kids, and all NPC patients, over the last 5 years.\u00a0 It\u2019s been an incredible journey, and we still have a long ways to go, but there IS HOPE!<\/p>\nBlessings,<br \/>\nBryan &amp; Laura<br \/>\n<a href=\"https:\/\/hadleyhope.com\/\">www.hadleyhope.com<\/a>\n","protected":false},"excerpt":{"rendered":"<p>Nov. Update This Thanksgiving season, the Hadley Family has a lot to be thankful for: We would like to sincerely thank everyone that came out to support our 5th\u00a0annual Harvest of Hope Dinner!\u00a0 The night was very special, with great food, wonderful entertainment, and terrific supporters!\u00a0 The warmth and support of everyone in the room&hellip;<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"_links":{"self":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages\/185"}],"collection":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/comments?post=185"}],"version-history":[{"count":3,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages\/185\/revisions"}],"predecessor-version":[{"id":261,"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/pages\/185\/revisions\/261"}],"wp:attachment":[{"href":"https:\/\/hadleyhope.com\/wp-json\/wp\/v2\/media?parent=185"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}