{"id":3562,"date":"2015-10-09T17:45:32","date_gmt":"2015-10-10T00:45:32","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=3562"},"modified":"2015-10-11T14:55:06","modified_gmt":"2015-10-11T21:55:06","slug":"kids-with-cancer-for-awareness-vigil-at-white-house-kicked-out-of-lafayette-park","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=3562","title":{"rendered":"Childhood Cancer Awareness; why won&#8217;t they &#8220;go GOLD&#8221;?"},"content":{"rendered":"<p><a href=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/4percentDelaney.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large wp-image-3580\" src=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/4percentDelaney-1024x256.jpg\" alt=\"4percentDelaney\" width=\"900\" height=\"225\" srcset=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/4percentDelaney-1024x256.jpg 1024w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/4percentDelaney-300x75.jpg 300w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/4percentDelaney-250x62.jpg 250w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/4percentDelaney-150x37.jpg 150w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/4percentDelaney.jpg 2047w\" sizes=\"auto, (max-width: 900px) 100vw, 900px\" \/><\/a><\/p>\n<p><a href=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01e790158a6fd9fc228c5b2428c6aaf9a4f5370bb6.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-thumbnail wp-image-3569\" src=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01e790158a6fd9fc228c5b2428c6aaf9a4f5370bb6-150x150.jpg\" alt=\"01e790158a6fd9fc228c5b2428c6aaf9a4f5370bb6\" width=\"150\" height=\"150\" srcset=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01e790158a6fd9fc228c5b2428c6aaf9a4f5370bb6-150x150.jpg 150w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01e790158a6fd9fc228c5b2428c6aaf9a4f5370bb6-318x318.jpg 318w\" sizes=\"auto, (max-width: 150px) 100vw, 150px\" \/><\/a><\/p>\n<h3>In Loving Memory of Evylah d. 10.10.15<\/h3>\n<div id=\"attachment_3585\" style=\"width: 160px\" class=\"wp-caption alignright\"><a href=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/Evylah.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-3585\" class=\"wp-image-3585 size-thumbnail\" src=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/Evylah-150x150.jpg\" alt=\"Evylah\" width=\"150\" height=\"150\" srcset=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/Evylah-150x150.jpg 150w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/Evylah-300x300.jpg 300w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/Evylah-318x318.jpg 318w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/Evylah.jpg 960w\" sizes=\"auto, (max-width: 150px) 100vw, 150px\" \/><\/a><p id=\"caption-attachment-3585\" class=\"wp-caption-text\">Sweet Evylah died of DIPG yesterday; another family decimated with grief, another beautiful light now in the sky.<\/p><\/div>\n<p>September was Childhood Cancer Awareness Month, but for some reason the President\u00a0refused to flood-light the White House gold, even for a day, as it goes pink for breast cancer, rainbow for same-sex marriage, and the list goes on. \u00a0To add insult to injury, on September 19, over 700 people, many young children with cancer undergoing treatment from all over the world, gathered at LaFayette Park for their scheduled and permitted White House Vigil for Childhood Cancer Awareness only to be kicked out of the Park by the Secret Service. \u00a0<a href=\"https:\/\/www.washingtonpost.com\/local\/social-issues\/cancer-stricken-children-and-their-parents-ejected-from-park-near-white-house\/2015\/09\/20\/416665a4-5fd5-11e5-9757-e49273f05f65_story.html\" target=\"_blank\">The full article<\/a>\u00a0can be found at the Washington Post.<iframe loading=\"lazy\" src=\"https:\/\/www.youtube.com\/embed\/W4CxgqRdx0E\" width=\"420\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe>CureFest activities continued, however, on Sunday for their annual walk and Festival on the National Mall where many foundations from around the world exhibited and shared stories and solidarity in their efforts to raise awareness for the inequities in research funding for our children with cancer. \u00a0Only 4% of our National Cancer Institute&#8217;s annual budget for cancer research targets pediatric cancer as a whole.<\/p>\n<p><a href=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01f6d7d5059ef8e377ef1774ac2d0c7a31ea747a30.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-medium wp-image-3570\" src=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01f6d7d5059ef8e377ef1774ac2d0c7a31ea747a30-225x300.jpg\" alt=\"01f6d7d5059ef8e377ef1774ac2d0c7a31ea747a30\" width=\"225\" height=\"300\" srcset=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01f6d7d5059ef8e377ef1774ac2d0c7a31ea747a30-225x300.jpg 225w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01f6d7d5059ef8e377ef1774ac2d0c7a31ea747a30-768x1024.jpg 768w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01f6d7d5059ef8e377ef1774ac2d0c7a31ea747a30-113x150.jpg 113w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/01f6d7d5059ef8e377ef1774ac2d0c7a31ea747a30.jpg 1536w\" sizes=\"auto, (max-width: 225px) 100vw, 225px\" \/><\/a>Many of us came to Washington DC for CureFest and the Vigil to find out why research for the leading cause of death in children after accidents and injuries is so underfunded. \u00a0No one in the Administration really wants to talk about it. \u00a0Our children are not coming first, but dead-last. \u00a0When presented with the attitude at the Vigil, it seemed to be a\u00a0confirming indication of\u00a0the reality all of us parents who lose a child to cancer experience in some way: \u00a0to the &#8220;system&#8221; our child is just a number. \u00a0Corporate profits on pharmaceutical investment are the number one priority. \u00a0People come after profits. \u00a0This is the reality we experience, in the case of DIPG, when we ask why nothing has been done in decades for a pediatric cancer with a 0% survival rate. \u00a0The reality for us, intended or not, is that our children are left to die.<\/p>\n<p><a href=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/09\/white-house-north-2007-dj.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-3518 size-medium\" src=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/09\/white-house-north-2007-dj-300x200.jpg\" alt=\"\" width=\"300\" height=\"200\" srcset=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/09\/white-house-north-2007-dj-300x200.jpg 300w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/09\/white-house-north-2007-dj-225x150.jpg 225w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/09\/white-house-north-2007-dj-150x100.jpg 150w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/09\/white-house-north-2007-dj.jpg 600w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a>I had the privilege of attending the Summit for the Congressional Caucus for Childhood Cancer that week, and the White House Briefing for Childhood Cancer Awareness Month. \u00a0I can tell you one thing for certain: \u00a0last year 2014, there was no discussion of the 4%, or the inequities in research funding for our children, with Dr. Varmus, then the Director of the NCI, stating flat-out that it simply would not be discussed at that time. \u00a0This year, there was more of a dialogue, and acknowledgement&#8211;but no answers. \u00a0There is still no transparency, that I could find, to the decision-making process concerning the prioritization of research. \u00a0This tells me that, until we are able to put in legislation that our children dying of cancer are a priority, it won&#8217;t happen. \u00a0We the People must demand it.<\/p>\n<div id=\"attachment_3581\" style=\"width: 160px\" class=\"wp-caption alignleft\"><a href=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/IMG_1878-e1444595317905.jpg\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-3581\" class=\"size-thumbnail wp-image-3581\" src=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/IMG_1878-e1444595317905-150x150.jpg\" alt=\"4th graders waiting for hours to perform...so they sang for us on the street.\" width=\"150\" height=\"150\" srcset=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/IMG_1878-e1444595317905-150x150.jpg 150w, https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/IMG_1878-e1444595317905-318x318.jpg 318w\" sizes=\"auto, (max-width: 150px) 100vw, 150px\" \/><\/a><p id=\"caption-attachment-3581\" class=\"wp-caption-text\">4th graders waiting for hours to perform&#8230;so they sang for us on the street.<\/p><\/div>\n<p>The fact that the President sent no word, no apology\u00a0to CureFest or the Childhood Cancer Community concerning the incident September 19 isn&#8217;t just deplorable&#8211;personally I think he should have gotten all the kids ice-cream&#8211;it&#8217;s just one more example of how our kids with cancer are being ignored by the Administration. \u00a0The White House Representative who invited us to the Briefing sent an apology to all those who attended that particular event, a handful compared to all those children who had gathered with their parents. \u00a0Thank goodness she did&#8211;and of course no one wanted it to happen, but for Heaven&#8217;s sake! \u00a0The President or Mrs. Obama should have said something, and one would think they would, but the experience resonates with their not turning the White House gold&#8211;as they turn it pink\u00a0for big money in breast cancer drug development. \u00a0Even fracking vehicles and equipment, big oil of course, turn pink for breast cancer.<\/p>\n<p><a href=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/Slide2.png\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-medium wp-image-3582\" src=\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2015\/10\/Slide2-300x200.png\" alt=\"Slide2\" width=\"300\" height=\"200\" \/><\/a>I call DIPG the Great Embarrassment because it&#8217;s had a 0% survival rate for so long, with so little attention despite the death sentence every year for some 300 children in our country, and because it exemplifies so well the plight of all childhood cancer&#8211; they are all marginalized as rare because they may not be&#8211;in the short term!&#8211;as profitable to invest in. \u00a0Forget the fact that we could cure all cancers, or at least bump up our understanding of biology and medicine up 5 notches, create new industry and jobs; no. \u00a0The next round of quarterly reports is\u00a0the confirmed priority.<\/p>\n<h3><\/h3>\n","protected":false},"excerpt":{"rendered":"<p>In Loving Memory of Evylah d. 10.10.15 September was Childhood Cancer Awareness Month, but for some reason the President\u00a0refused to flood-light the White House gold, even for a day, as it goes pink for breast cancer, rainbow for same-sex marriage, and the list goes on. \u00a0To add insult to injury,\u2026<\/p>\n<p class=\"continue-reading-button\"> <a class=\"continue-reading-link\" href=\"https:\/\/jacksangelsfoundation.com\/?p=3562\">Continue reading<i class=\"crycon-right-dir\"><\/i><\/a><\/p>\n","protected":false},"author":1,"featured_media":3580,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[240,312,102],"tags":[261,320,78,112,319,284,314,9,318,313,239,18,321,96,322,316,317,315],"class_list":["post-3562","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-call-to-action","category-commentary","category-personal-story","tag-childhood-cancer-awareness","tag-congressional-caucus-for-childhood-cancer","tag-congressman-mccaul","tag-congressman-steve-knight","tag-congressman-vanhollen","tag-curefest","tag-curefest-white-house-vigil","tag-dipg","tag-dr-michelle-monje","tag-dr-varmus","tag-michelle-obama","tag-national-cancer-institute","tag-national-mall","tag-president-obama","tag-summit-for-the-congressional-caucus-for-childhood-cancer","tag-the-great-embarrassment","tag-white-house-briefing","tag-white-house-vigil-for-childhood-cancer"],"_links":{"self":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/3562","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=3562"}],"version-history":[{"count":0,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/3562\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/media\/3580"}],"wp:attachment":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=3562"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=3562"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=3562"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}