{"id":5715,"date":"2018-04-08T14:11:52","date_gmt":"2018-04-08T21:11:52","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=5715"},"modified":"2018-04-08T14:13:14","modified_gmt":"2018-04-08T21:13:14","slug":"dipg-awareness-day-a-national-movement","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=5715","title":{"rendered":"DIPG Awareness Day\u2014A National Movement"},"content":{"rendered":"

I’m re-posting this as, for some reason, the blog page isn’t allowing access to posts other than the one page…sorry, I’m not a tech genius and I don’t have a volunteer working on organizing our site. Original date was July 24, 2017.<\/p>\n

(H.Res.69<\/a> asks for a date henceforth, not just for this year, and retroactively–that May 17th be National DIPG Awareness Day. \u00a0The importance of the Resolution is with the raising of awareness to the negelect of pediatric cancer research in our medical research system, and the unacceptable realities that parents across the country must endure, year after year. \u00a0DIPG exemplifies this problem with pediatric cancer, and H.Res.69 (text)<\/a> boldly asks that high-risk and pediatric cancers have greater priority for research funding consideration in our system today. \u00a0It demands a repeat of this article from 5\/14\/2017.\u00a0 (informational flyer and text of bill)<\/a><\/em><\/p>\n

I discovered it was the 2nd<\/sup>\u00a0most common pediatric brain tumor, and responsible for the majority of pediatric brain cancer deaths each year.\u00a0 If brain cancer is the leading cause of death in kids with cancer, it\u2019s hardly irrelevant, no matter how you define \u2018rare\u2019.<\/p><\/blockquote>\n

\"\"<\/a><\/em><\/p>\n

May 14, 2017, Santa Clarita, CA<\/a>\u2014<\/em>Over half\u00a0of the states in the USA have had advocates working hard this year at getting a declaration of some kind for DIPG Awareness Day, May 17 for 2017 in support of a DIPG Awareness Day.\u00a0 H.Res.69, the National DIPG Awareness Resolution introduced by Congressman Steve Knight January 30 2017, currently awaits a vote in the House of Representatives.\u00a0 It waited for a vote all year last year as H.Res.586, while roughly more\u00a0300 children died of the disease in the US(1).\u00a0 With a simple House vote,\u00a0H.Res. 69<\/a>\u00a0would acknowledge the children who walk so bravely toward their death in full awareness, the suffering of their families, and the urgent need for greater pediatric cancer research funding.\u00a0 DIPG (diffuse intrinsic pontine glioma) exemplifies in a powerful way the marginalization of every childhood cancer, demonstrating that even with its prevalence\u2014taking more lives than any other brain tumor, and brain cancer being the leading cause of death in kids with cancer\u2014there has been no change in standard treatment protocol nor terminal prognosis for the disease in over 50 years.<\/p>\n

\u00a0<\/em><\/p>\n

\"\"<\/a>Thanks to Jenny Mosier, Executive Director of the Michael Mosier Defeat DIPG Foundation in Bethesda, MD, a movement was initiated in October 2016 called \u201cDIPG Across the Map\u201d, an effort to get as many States as possible to declare a DIPG Awareness Day May 17, as Michael perished to the disease on May 17, 2015. (www.defeatDIPG.org) So far in 2017, 16 States have made the Declaration and there are some 10 more pending.\u00a0 \u201cWe are hoping this movement, California included, will lend support for the National Resolution,\u201d says Janet Demeter, president of Jack\u2019s Angels Foundation in Agua Dulce, CA, an instigator of H.Res.69, which, in following suit with the \u201cDIPG Across the Map\u201d movement designates May 17th<\/sup>\u00a0also for a cohesive effort for DIPG. \u201cIt\u2019s going to happen, whether in-time, or retroactively, May 17th<\/sup>\u00a0is DIPG Awareness Day.\u201d\u00a0 Demeter is planning a special celebration in Santa Clarita on the date, which may include a Proclamation from the City Council.<\/p>\n

\"\"<\/a>It is the reality endured by these children and their families each year that was the original motivation for the\u00a0DIPG Awareness movement<\/em>.\u00a0 \u201cOn top of a terminal prognosis there is the discovery that your child\u2019s life doesn\u2019t matter to our medical research system, because \u2018the numbers aren\u2019t great enough for investors\u2019; I live for the day when no one has to hear that,\u201d explains Demeter.\u00a0 It was her meeting with then CA-State Assemblyman Scott Wilk, moved by her story, who wrote the original California Resolution in 2014 for DIPG Awareness Week.\u00a0 Congressman Steve Knight was State Senator at the time, and Jack\u2019s Angels began working with the Congressman in late 2015, during his first term to help create the National Resolution first introduced in January 2016(H.Res.586), re-introduced to the 115th<\/sup>\u00a0Congress January 30th<\/sup>\u00a02017 as H.Res.69.\u00a0 DIPG experts Sabine Mueller of UCSF, Michelle Monje of Stanford University, and Adam Green of UC Denver have all been contributors to the DIPG Awareness Resolutions.<\/p>\n

\"\"<\/a>\u201cAs I joined the childhood cancer advocacy community in 2014, I realized that the experience of marginalization wasn\u2019t isolated to DIPG, but was a common to many childhood cancers.\u201d\u00a0 Little Jack Demeter\u2019s (8\/30\/08 \u2013 7\/30\/12) life was cut short by the disease in 2012, at which time his mother, Janet Demeter, vowed to be a force for change.\u00a0 \u201cWe were told it was so rare it was like being struck by lightning, which only served to excuse the lack of solutions and research activity for this disease of which we had never heard, but we learned was well-known by clinicians.\u00a0 After Jack\u2019s death, I discovered it was the 2nd<\/sup>\u00a0most common pediatric brain tumor, and responsible for the majority of pediatric brain cancer deaths each year.\u00a0 If brain cancer is the leading cause of death in kids with cancer, it\u2019s hardly irrelevant, no matter how you define \u2018rare\u2019.\u201d<\/p>\n

Cancer remains the leading cause of disease-related mortality in children in the United States.(2)<\/p>\n

Parents have been expected to accept that the 4% of the NCI research budget, and just 2% of ACS and LLS budgets for pediatric cancer research are generous numbers considering the patient population of children in hospitals is proportional to them, but it begs for questions as to how research is prioritized and who makes the decisions. \u00a0H.Res.69 simply asks that pediatric and high mortality rate cancers have greater consideration for research funding as currently, they are not priorities.\u00a0 Parents have been demanding a conversation about the 4% since 2014 only to hear \u201cno\u201d.\u00a0 There has been no public conversation, no statement, and no official update into pediatric funding percentages from the National Cancer Institute since 2013.\u00a0\u00a0 Most parents of children with DIPG are far too emotionally devastated from their experience to take immediately to advocacy or activism.\u00a0 H.Res.69 was written for these parents, and for the children who will never have a voice in our world.<\/p>\n

\"\"<\/a>Demeter\u2019s activism began by running with angel wings covered with hundreds of ribbons for DIPG children; she would go to Washington that way, wearing them to the Summits for the Congressional Caucus for Childhood Cancer (2014-16) and White House Briefings (2015-16) to represent them.\u00a0 \u201cThe further we as advocates get from the death of our child, the easier it is to be placated into accepting that 4% is actually generous, that we needn\u2019t speak out about it\u2026this is dangerous political correctness.\u00a0 Yes, we must work with the powers that be, but are not serving them nor those we represent by supporting political complacency.\u00a0 We must always be thinking of the child whos life was just snuffed out\u2014the mother devastated by losing her beautiful daughter, once so full of life and hope\u2014than to accept a system which values commerce certainly, but does not adequately reflect the values of the People it serves.\u201d<\/p>\n

For more information about H.Res.69, visit\u00a0www.hres69.org<\/a>.<\/p>\n

(1)Interpolation of the statistics reported in\u00a0H.Res.69<\/a>, with the median survival time being 9 months post-diagnosis. \u00a0See also “About DIPG” at www.jacksangels.org,\u00a0https:\/\/jacksangelsfoundation.com\/?page_id=7<\/a><\/p>\n

(2) American Childhood Cancer Organization,\u00a0http:\/\/www.acco.org\/us-childhood-cancer-statistics\/<\/a><\/p>\n

(3)”An Analysis of the National Cancer Institute\u2019s Investment in Pediatric Cancer Research,” NCI September, 2013,\u00a0https:\/\/www.cancer.gov\/types\/childhood-cancers\/research\/pediatric-analysis.pdf<\/a><\/p>\n

\u00a0<\/em><\/p>\n

This article was written in honor of Julia Barocio and her mother, Sonia Gonzalez, of West Covina, CA.\u00a0 Julia died of DIPG on May 4, 2017.\u00a0 She was an avid softball player at her high school, and wanted to play Softball for UCLA.<\/em><\/p>\n

\"\"<\/a>Jack\u2019s Angels Foundation<\/em><\/p>\n

32520 Wagon Wheel Rd.<\/em><\/p>\n

Santa Clarita, CA 91390<\/em><\/p>\n

661-977-3125<\/em><\/p>\n

jacksangels1@gmail.com<\/em><\/p>\n

www.jacksangels.org<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

I’m re-posting this as, for some reason, the blog page isn’t allowing access to posts other than the one page…sorry, I’m not a tech genius and I don’t have a volunteer working on organizing our site. Original date was July 24, 2017. (H.Res.69 asks for a date henceforth, not just\u2026<\/p>\n

Continue reading<\/i><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[240,72,140],"tags":[30,1182,1170,1175,1168,1178,1177,373,32,320,112,37,9,1013,1176,977,375,637,1035,73,290,777,1185,1169,518,1034,502,536,1179,1171,18,1012,83,1183,310,1173,1184,139,1161,295,1186,1174,1180,616,1181,54,1172,1062,317],"class_list":["post-5715","post","type-post","status-publish","format-standard","hentry","category-call-to-action","category-editorial","category-newsflash","tag-30","tag-advocacy-community","tag-arizona","tag-bethesda-md","tag-brain-cancer-deaths","tag-ca-dipg-awareness-week","tag-ca-state-assemblyman-scott-wilk","tag-california","tag-childhood-cancer","tag-congressional-caucus-for-childhood-cancer","tag-congressman-steve-knight","tag-diffuse-intrinsic-pontine-glioma","tag-dipg","tag-dipg-across-the-map","tag-dipg-awareness-movement","tag-dipg-children","tag-h-res-586","tag-house-of-representatives","tag-hres69","tag-jacks-angels-foundation","tag-janet-demeter","tag-jenny-mosier","tag-julia-barocio","tag-marginalization","tag-maryland","tag-may-17","tag-medical-research-system","tag-michael-mosier-defeat-dipg-foundation","tag-michelle-monje","tag-minnesota","tag-national-cancer-institute","tag-national-dipg-awareness-resolution","tag-nci","tag-no-official-update","tag-pediatric-brain-tumor","tag-pediatric-cancer-research-funding","tag-political-correctness","tag-rare-disease","tag-sabine-mueller","tag-santa-clarita-ca","tag-sonia-gonzalez","tag-standard-treatment-protocol","tag-stanford-universty-adam-green","tag-terminal-prognosis","tag-uc-denver","tag-ucsf","tag-virginia","tag-washington","tag-white-house-briefing"],"_links":{"self":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/5715","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=5715"}],"version-history":[{"count":0,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/5715\/revisions"}],"wp:attachment":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=5715"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=5715"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=5715"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}