{"id":4983,"date":"2016-10-15T13:51:29","date_gmt":"2016-10-15T20:51:29","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=4983"},"modified":"2016-10-20T11:00:32","modified_gmt":"2016-10-20T18:00:32","slug":"letter-to-the-president-3","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=4983","title":{"rendered":"Letter to the President"},"content":{"rendered":"

There is a specialized killer on the loose taking the lives of 350 children a year in our country with certain regularity; I believe we\u2019d be using whatever resources necessary to track him down if he were a person.<\/p><\/blockquote>\n

September 6, 2016<\/p>\n

Dear President Obama,<\/p>\n

\"themonster\"<\/a>

click here for DIPG Report<\/p><\/div>\n

I\u2019ve written to you a few times over the last 3 years about diffuse intrinsic pontine glioma, or DIPG, and the lack of research funding for the deadliest pediatric cancer. \u00a0Currently, almost all DIPG research is funded by organizations initiated by bereaved parents or families, which is an enormous burden considering their challenges.\u00a0 When my son was diagnosed in 2011, DIPG support organizations were not so numerous and easy to find as they are now, with the advent of social media. \u00a0DIPG groups are now more visible despite the isolating experience of the diagnosis, with new pages daily for DIPG children on Facebook as well as daily deaths.\u00a0 The lack of research funding is always explained by \u201cnumbers\u201d\u2014which determine, in whatever relative sense, the value of their lives, such that on top of a terminal diagnosis we learn that their lives are not numerous enough to warrant the research to save them.\u00a0 \u00a0When I\u2019ve questioned government officials about this over the past few years, what persists is the argument that it\u2019s not fair, with regard to public funds, to focus on any one disease.<\/p>\n

I am just a mom who lost her son to DIPG.\u00a0 I am not a legal expert or savant, but I do have a deep respect for the Constitution of the United States.\u00a0 I have also heard it said numerous times, and have read, that it is our duty as citizens to speak out when we see the basic principles of this Constitution, and our inalienable rights therein, compromised for lesser principles.\u00a0 In this case, we are told there are no solutions for our children, in over 50 years of clinical observation, because their numbers don\u2019t warrant research investment.\u00a0 And so, we must accept not only a terminal prognosis, but watch in utter helplessness our children die, which they experience in full cognitive awareness until respiration fails\u2014because to the system their lives don\u2019t matter.\u00a0 And of course, they do, and to the tune of tens of thousands now dead in our country alone.\u00a0 Those are big numbers; their total sphere of influence is astronomical.<\/p>\n

I cannot explain to you the internal outrage and anguish this evokes, except that my life\u2019s energies are now committed to seeing this experience change for other human beings.\u00a0 That we can quickly purpose billions to help people at the border last year, but we will do nothing to save these children\u2014while affirming that we want to cure cancer mind you\u2014is a most unbelievable scenario to a bereaved parent.\u00a0 There is a specialized killer on the loose taking the lives of 350 children a year in our country with certain regularity; I believe we\u2019d be using whatever resources necessary to track him down if he were a person.<\/p>\n

Of what are we so afraid?\u00a0 Why is there a myriad of excuses for not helping these children\u2014now tens of thousands dead\u2014when it comes to our government resources, our tax dollars purposed for cancer research?\u00a0 Are said resources not assumed to help those most vulnerable of our citizens, our children, when all other private sector interests abandon them?\u00a0 Who would object to our allocating more funds\u2014more than 4% of our cancer research budget\u2014to cure the deadliest of cancers?\u00a0 That\u2019s what I want to know.\u00a0 I am not surprised, but I am extremely disappointed that the Moonshot Initiative does not even address the 4% issue which Americans have been complaining about for the past few years.\u00a0 No one will discuss it.\u00a0 And numbers are used to justify why we are ignoring these dying children and their emotionally decimated families. \u00a0We are told the Administration wants our input, yet it has consistently ignored it.<\/p>\n

For those certain to die, and for our children, we must take a stand for them to be considered a priority.\u00a0 We do this without question in the emergency room; we must start to prioritize human life with our medical research system.<\/p><\/blockquote>\n

DIPG is not a rare pediatric cancer; technically a rare disease<\/em>, it\u2019s the 2nd<\/sup> most common pediatric brain tumor, and its responsible for 80% of pediatric brain tumor deaths each year.\u00a0 If brain tumors are the leading cause of death in children with cancer, why are we not prioritizing this research?\u00a0 Why are we not prioritizing the deadliest cancers responsible for such excessive cumulative, and certain death, the ones that elude our current scientific understanding, the research that would logically elevate our science and bring us closer to the cure for all cancers that we assert is a US priority?\u00a0 This state of affairs is entirely unacceptable to many of us, and definitely illogical if human life is the governing principle of our decision-making, which brings me to my original point.<\/p>\n

This is an example of where Life, Liberty, and the Pursuit of Happiness\u2014for all Americans\u2014is taking a back-seat to other interests.\u00a0 Whether these interests be hidden or overt, it cannot be allowed to continue, not without a fight.\u00a0 Here I am referring to the fact that less than 4% of NCI funds benefits pediatric cancer research.\u00a0 Until we are willing to name a specific disease, not just cancer\u2014which is an enormous field\u2014but the worst of the worst and say, \u201cwe\u2019ve GOT this!\u201d and then move on to the next greatest challenge, we won\u2019t cure cancer.\u00a0 Not in a timely manner.\u00a0 Time is scarce for these children.\u00a0 How many more have to die for them to matter, for these children and their families to be recognized, for the name of the disease to be spoken?<\/p>\n

Please consider Congressman Steve Knight\u2019s HRes586, the only current legislative text including the plea for higher consideration for low-survival rate cancers and years of life lost with government research grants.\u00a0 For those certain to die, and for our children, we must take a stand for them to be considered a priority.\u00a0 We do this without question in the emergency room; we must start to prioritize human life with our medical research system. \u00a0This is not to disregard large populations in need of solutions, the most frequently used excuse to disregard these children; the suggestion is to include low survival rates and years of life lost as important factors<\/em> in the decisions made with NCI grants. \u00a0HRes586 is an Awareness Resolution using DIPG as a poignant example of the neglect of pediatric cancer research in general.\u00a0 It calls for a National DIPG Awareness Week, finally acknowledging the thousands who have bravely faced certain death, and bringing hope to those currently afflicted.<\/p>\n

I am attaching a report about DIPG<\/a> which includes both the medical and personal perspective, written by Victoria Thomas MS, RN. \u00a0We are submitting to various media outlets including CNN and the New York Times for Childhood Cancer Awareness Month 2016.\u00a0 If you would help recognize DIPG and the important issues it represents for all childhood cancer, I and countless others will remain obliged to you for the hope you will bring to so many.\u00a0 I personally don\u2019t care if it\u2019s a day, a week, just that there is a motion to recognize these children who have, in effect, been left to die for decades.<\/p>\n

You took office shortly after my son was born, and he would have been 8 years old by now.\u00a0 Truly epic for the United States, I will always have a special regard for your Presidency, your kindness in responding to my letters with a copy of the 2014 Proclamation, and in expressing your condolences for Jack and our loss.\u00a0 Thank you for the 2016 Proclamation for our children across this Great Nation, and I pray that in some way your influence will help prioritize terminal cancer in our medical research system\u2014for our children, for all people, that the value of their lives never be questioned.<\/p>\n

For your kind attention to this matter, I will remain always<\/p>\n

Respectfully yours,<\/p>\n

 <\/p>\n

Janet Demeter<\/p>\n

President, Jack\u2019s Angels Foundation<\/p>\n

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

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

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

www.jacksangels.org<\/a><\/p>\n

    \n
  1. 661-977-3125<\/li>\n
  2. 818-400-2724<\/li>\n<\/ol>\n

     <\/p>\n

    P.S.<\/p>\n

    Currently, the Michael Mosier Defeat DIPG Foundation is organizing an effort across the 50 States for us to seek Gubernatorial Proclamations for a DIPG Awareness Day, May 17.\u00a0 Jack\u2019s Angels and other organizations across the country are helping with this.\u00a0 I was told by the OSTP last year that we would have to demonstrate that it\u2019s a country-wide desire to have a Presidential Proclamation for the President to consider it.\u00a0 We organized with several other advocacy groups including the Children\u2019s Cause Cancer Advocacy to support HRes586, as well as DIPG events dotting the May landscape.\u00a0 But we who have been hit hard by DIPG are not quick to organize and fight after having been completely decimated emotionally, spiritually, financially.\u00a0 We are coming around, but I hope that this nationwide effort for Gubernatorial Proclamations is enough to show a national desire.<\/p>\n","protected":false},"excerpt":{"rendered":"

    There is a specialized killer on the loose taking the lives of 350 children a year in our country with certain regularity; I believe we\u2019d be using whatever resources necessary to track him down if he were a person. September 6, 2016 Dear President Obama, I\u2019ve written to you a\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":[240,312,138,692,140],"tags":[832,30,829,337,137,112,9,635,435,830,367,432,481,83,831,96,833,834,774],"class_list":["post-4983","post","type-post","status-publish","format-standard","hentry","category-call-to-action","category-commentary","category-awareness-letters","category-moonshot","category-newsflash","tag-2014-proclamation","tag-30","tag-americans","tag-cancer-research","tag-childhood-cancer-awareness-month","tag-congressman-steve-knight","tag-dipg","tag-facebook","tag-hres586","tag-life-liberty-and-the-pursuit-of-happiness","tag-moonshot","tag-moonshot-initiative","tag-national-dipg-awareness-week","tag-nci","tag-nci-grants","tag-president-obama","tag-terminal-cancer","tag-us-constitution","tag-us-priority"],"_links":{"self":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/4983","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=4983"}],"version-history":[{"count":0,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/4983\/revisions"}],"wp:attachment":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=4983"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=4983"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=4983"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}