{"id":5937,"date":"2018-01-23T11:19:37","date_gmt":"2018-01-23T19:19:37","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=5937"},"modified":"2018-01-23T11:27:22","modified_gmt":"2018-01-23T19:27:22","slug":"congressman-knight-champions-awareness-legislation-for-forgotten-children","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=5937","title":{"rendered":"Congressman Knight Champions Awareness Legislation for Forgotten Children"},"content":{"rendered":"

January 23, 2018, Santa Clarita, CA–<\/i><\/b>Amid an intensive political landscape in 2018 persists an National Awareness Resolution, H.Res.69, for children with the deadliest pediatric brain cancer, DIPG: \u00a0diffuse intrinsic pontine glioma. \u00a0Not only does the bill call for an Awareness Day for these children and their families, May 17, it asks that our medical research industry take into greater consideration research funding for pediatric and high-risk cancers. \u00a0Brain cancer is the leading cause of death in children afflicted with cancer, and DIPG is responsible for the majority of those deaths annually in the United States[1].<\/span> \u00a0Troublesome is the fact that there has been no change in the standard treatment protocol nor the terminal prognosis for DIPG in over 50 years; Neil Armstrong\u2019s daughter Karen, aka \u201cMuffy\u201d, died of DIPG in 1962. \u00a0<\/span><\/p>\n

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Katelyn, mother Jo Sandoval, and Janet Demeter at CHLA 1\/15\/18<\/p><\/div>\n

Despite the fact that cancer is the #1 disease-related cause of death in our children in the United States<\/span>, it is one of the least funded areas of cancer research[2]. \u00a0In this way, DIPG epitomizes the experience of a pediatric cancer diagnosis: there are few options because \u201cthe numbers aren\u2019t great enough for investors.\u201d \u00a0\u00a0Families are left to watch and wait in utter helplessness as their child fades from this earthly existence, not knowing exactly when, how, or ultimately why. \u00a0\u201cIf there were one thing I could help to change, it would be that experience,\u201d relates Janet Demeter, a local mom and activist for DIPG and children with cancer.<\/span><\/p>\n

Congressman Knight\u2019s attention to his constituent\u2019s activism for children with cancer and specifically for DIPG led to the writing of H.Res.69[3].<\/span> \u00a0Jack\u2019s Angels Foundation is local to his district and President Janet Demeter first worked with Steven Knight when he was CA State Senator, along with then CA State Assemblyman Scott Wilk (now CA State Senator) in 2014 for the writing of ACR151, which declared the fourth week of May to be DIPG Awareness week. \u00a0This was the first appearance of DIPG Awareness in the realm of legislation. \u00a0In this last year 2017, 21 States declared an Awareness Day for DIPG, including California thanks to current Assemblyman Dante Acosta, all concurring on May 17 as written in H.Res.69. \u00a02017 Santa Clarita Mayor Cameron Smyth graciously added the City of Santa Clarita to the list of observing cities and states of May 17 as DIPG Awareness Day.<\/span><\/p>\n

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Braylynn perishes to DIPG 1\/15\/18, FL, father’s reaction<\/p><\/div>\n

This date of May 17 was agreed upon through the work of the Michael Mosier Defeat DIPG Foundation in Bethesda, MD, which worked to create the 2017 \u201cDIPG Across the Map\u201d project with the goal of getting all 50 States to make such a Proclamation, and so H.Res.69 was revised accordingly for a coherent effort for DIPG. \u00a0Just this last December 2017, the DIPG Advocacy Group, a creation of Jack\u2019s Angels, took its first trip to Washington DC in support of the Resolution, to encourage activity within the House Energy and Commerce Committee where it was introduced. \u00a0\u201cDIPG raises awareness in a powerful way to the neglect of research funding for pediatric cancers in our medical research industry. \u00a0All exclusively pediatric cancers are marginalized as rare and receive little to no research funding, no matter how deadly, no matter how many lives they continue to claim. \u00a0It\u2019s kept very hushed, and survival statistics are misleading to tout industry. \u00a0Our children with cancer have been falling through the cracks and loopholes of the system for decades; H.Res.69 at least brings it to National awareness with the hope of some real conversation about solutions. \u00a0We have Steve Knight to thank for that, for championing a bill that lends a voice to thousands of children who will never have one,\u201d maintains Demeter, who has managed to attract volunteer support for the DIPG Advocacy Group from across the United States. \u00a0She concludes, insistently, \u201cI\u2019m asking all locals to join this leadership in asking your friends and family across the country to encourage their Representative in the House to sign their names to the bill, and to thank Steve Knight!\u201d<\/span><\/p>\n

For more information about H.Res.69, the DIPG Awareness Resolution, the DIPG Advocacy Group, and Jack\u2019s Angels Foundation, visit <\/span>www.hres69.org<\/span><\/a>, an advocacy website for H.Res.69, and <\/span>www.jacksangels.org<\/span><\/a>, Jack\u2019s Angels home website. \u00a0The DIPG Advocacy Group also can be found on Facebook for news, updates and conference calls.<\/span><\/p>\n

[1]\u00a0 Pediatric Brain Tumor Foundation, <\/span>www.pbtf.org<\/span><\/a>, National Brain Tumor Society, <\/span>www.braintumor.org<\/span><\/a>.\u00a0 [2]\u00a0<\/span>ACCO American Childhood Cancer Organization, www.acco.org, [3]<\/span>It first was introduced 1\/16\/2016 to the 114th Congress 2nd Session as H.Res.586, which then became H.Res.69 with re-introduction to the 115th Congress in January of 2017 with May 17 designated as DIPG Awareness Day. \u00a0May is Brain Tumor Awareness Month. <\/span><\/p>\n

 <\/p>\n

Jack\u2019s Angels Foundation<\/span><\/p>\n

Writing Staff<\/span><\/p>\n

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

Agua Dulce, CA 91390<\/span><\/p>\n

661-977-3125 office<\/span><\/p>\n

818-400-2724 mobile\/txt<\/span><\/p>\n

jacksangels1@gmail.com<\/span><\/a><\/p>\n

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

January 23, 2018, Santa Clarita, CA–Amid an intensive political landscape in 2018 persists an National Awareness Resolution, H.Res.69, for children with the deadliest pediatric brain cancer, DIPG: \u00a0diffuse intrinsic pontine glioma. \u00a0Not only does the bill call for an Awareness Day for these children and their families, May 17, it\u2026<\/p>\n

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