{"id":6907,"date":"2020-05-11T10:25:59","date_gmt":"2020-05-11T17:25:59","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=6907"},"modified":"2020-05-11T10:25:59","modified_gmt":"2020-05-11T17:25:59","slug":"moonshot4kids-to-house-committee-leadership","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=6907","title":{"rendered":"#Moonshot4Kids: To House Committee Leadership"},"content":{"rendered":"\n
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To\nChairman Pallone, Ranking Member Walden, Chairwoman Eshoo, and Ranking Member\nDr. Burgess:<\/p>\n\n\n\n

DIPG Advocacy Group and the undersigned are asking for your attention to the leading cause of cancer-related death in children, pediatric brain cancer, and H. Res. 114, the DIPG Awareness Resolution.\u00a0 We are asking for its process through Committee for the possibility of a House vote this Congress.\u00a0 After 4 years have passed, three introductions, and approximately 1600 more deaths from DIPG alone in the United States, little has changed for these children.<\/p>\n\n\n\n

Please\nconsider these lesser-known facts about childhood cancer:  brain tumors are the #1 cause of childhood\ncancer deaths in our country today. \nDIPG, diffuse intrinsic pontine glioma, is the 2nd most common pediatric\nbrain tumor and is the leading cause of death in children afflicted with brain\ncancer, representing a significant portion of the annual childhood cancer death\ntoll.  There has been no change in its standard treatment protocol, nor\nits prognosis, since Neil Armstrong’s daughter Karen died of it in 1962. \nChildren with cancer are systematically overlooked by a medical research\ninvestment culture concerned more with prompt and sizeable returns than the urgent\nneeds of these children.<\/p>\n\n\n\n

Due\nto progress in developing effective treatments for many types of leukemia, DIPG\nis not the success story people want to hear amid a barrage of commercials\nasserting that 80% of children survive cancer. Until there is more awareness of\nthis this reality among our representatives in Congress and the greater public,\nsolutions for children with brain cancer will remain elusive; modest\nallocations for childhood cancer legislation will continue to be a fight for\nour advocates where there should be no question.  Sadly, parents will\ncontinue to hear that there are no solutions for their children as they\nhelplessly witness their decline and death, because \u201cthe numbers aren\u2019t great\nenough for investors\u201d in the wealthiest country in the world.  By giving\nattention and due process to this Resolution, you have the power to affect\nchange, and help bring needed attention and resources to our scientists who\nneed more support for this crucial, and valuable, research, funded almost\nentirely by parents who have already paid the ultimate price.<\/p>\n\n\n\n


\nAs Covid-19 exposes weaknesses in our system of health care, so pediatric brain\ncancer exposes the failure of our medical research investment system to address\nthe urgent, unmet needs of our most vulnerable population–our children. \nIn the past four years bringing this message to Washington, there has never\nbeen a convenient time to consider the needs of children with DIPG brain\ncancer, and the terrible reality of their situation.  Please be aware:  while retaining full cognitive awareness,\nDIPG children lose control of their bodies–with some in great pain and\nneurological duress–as with tumor progression, respiration finally\nceases.  They are aware of their impending doom as their parents struggle\nto reckon with it, failing to provide solutions or to feel adequate in guiding\nthem to their end, though they try with all their might.  This cruel\nexperience has continued unchecked for decades, in obscurity and darkness; from\ndiagnosis these children and their families have no hope.  \u201cGo make\nmemories,\u201d parents routinely hear. <\/p>\n\n\n\n

With recognition there is hope; you may not have heard of DIPG because these children, mostly between the ages of 5 and 9 years old, are fighting for their lives and most all of them die; their parents are typically too devastated to conceive of hopeful advocacy.\u00a0 It would be tragic still if this movement for awareness for childhood brain cancer, during Brain Tumor Awareness Month, were to become another casualty of the pandemic when all we are asking for our children is a day of recognition, a motion which would support, not detract from other measures important to national interest today.<\/p>\n\n\n\n

Recognition\nfrom our Federal Government matters; H. Res. 114 would create awareness for\ndoctors to know there are clinical trials worth trying as we seek to move\nhopeful treatments forward.  These\nchildren might be given treatment access priority during a pandemic when a few\nweeks delay can mean missing a life-saving opportunity.  Awareness gives parents crucial knowledge at\ndiagnosis concerning experimental research when a matter of days can mean life or\ndeath.<\/em>  Indeed, clinicians would be alerted to the\ncommon signs of brain cancer, increasing the chances of early detection,\nlife-extension, and survival.  <\/p>\n\n\n\n

At\nthe recent #Moonshot4Kids Congressional Briefing in Rayburn on 2\/13\/2020,\noriginally intended as a hearing to share this information with the Health\nSubcommittee, Dr. Adam Resnick (CHOP), leading scientist for CBTTC spoke\nauthoritatively to the fact that exposing DIPG and the value of pediatric brain\ncancer research opens new opportunities for systemic change\n<\/strong>in\nthe way we share data, conduct research and fund new clinical trials for\ntreatments.<\/p>\n\n\n\n

Thank\nyou for your consideration for our children with brain cancer during Brain\nTumor Awareness Month. You possess the power to bring hope to pediatric brain\ncancer with allowing process for this measure.   In a bipartisan way,\ntwenty-five percent (and growing) of the House of Representatives have signed\non to H. Res. 114. Please allow our \u201cMoonshot4Kids\u201d a chance to bring hope and\nmuch needed attention to a dire situation now, this Congress.  Thank you\nfor your consideration and leadership.<\/p>\n\n\n\n

Respectfully\nyours,<\/p>\n\n\n\n

Janet\nDemeter, Santa Clarita, CA<\/p>\n\n\n\n

Elizabeth\nPsar,\nKnoxville TN<\/p>\n\n\n\n

Paul\nMiller, Littleton CO,<\/p>\n\n\n\n

DIPG Advocacy Group Founders<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

To Chairman Pallone, Ranking Member Walden, Chairwoman Eshoo, and Ranking Member Dr. Burgess: DIPG Advocacy Group and the undersigned are asking for your attention to the leading cause of cancer-related death in children, pediatric brain cancer, and H. Res. 114, the DIPG Awareness Resolution.\u00a0 We are asking for its process\u2026<\/p>\n

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