November 13, 2016<\/p>\n
Re:\u00a0 SOS; American Children Dying Daily #CureDIPG #JacksAngels<\/p>\n
DIPG Report<\/a> \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0Letter to President Obama 9\/6\/2016<\/a>\u00a0 \u00a0H.Res.586<\/a><\/p>\n To the Honorable President-Elect Trump and his Staff:<\/p>\n I write to you with great hope in my heart that indeed the change you represent in American History will favor Government\u2019s hearing the urgent needs of our most vulnerable citizens, our children with terminal cancer.\u00a0 I\u2019ll preface my story by telling you that I was greatly disappointed and puzzled by the lack of response from the 2008-2016 Administration to the appeals of thousands of parents over the last several years for more consideration for Government research funding to save the lives of children with cancer.\u00a0 Only 4% of the NCI budget benefits pediatric cancer as a whole.\u00a0 Though we deeply appreciated President Obama\u2019s Proclamation for Childhood Cancer Awareness Month in September of 2010, and then again in 2014 and 2016, little to nothing was done to acknowledge the neglect of pediatric cancer research funding by the National Cancer Institute.\u00a0 Yes, more funding to NIH is crucial, but it makes no difference in how the NCI prioritizes research grants.\u00a0 DIPG, diffuse intrinsic pontine glioma, is one of the top killers of children with cancer in the USA yet nothing has changed in prognosis or standard treatment protocol in over 50 years.\u00a0 Parents routinely hear that there are no solutions for their child because the numbers aren\u2019t great enough for investors and so they must watch on, helplessly, as their child dies a horrible death.\u00a0 This is something we could do something about but the choice is made, year after year, to do nothing.<\/p>\n <\/p>\n How does this translate into real experience?\u00a0 You hear there\u2019s nothing to be done after getting a gut-kicking, mind-blowing terminal diagnosis when not that long ago, everything was fine.\u00a0 All of the sudden, my son Jack was limping and favoring one side and after waiting 5 days at the hospital for an MRI, it was determined he had diffuse intrinsic pontine glioma.\u00a0 Inoperable, no chance of survival; I could take him home and make him comfortable, or try irradiation which might \u201cbuy us some time\u201d.\u00a0 Everything was about quality of whatever indeterminate amount of life was left for him.\u00a0 He was only 3.\u00a0 He was the love of my life. \u00a0Never have I experienced such an inescapable cloud of darkness.\u00a0 Somehow it was my fault.\u00a0 The doctors said it wasn\u2019t; I asked them why there was nothing for him and they told me it was rare.\u00a0 They told me \u201cthe numbers weren\u2019t great enough for investors.\u201d\u00a0 So, on top of everything, my son\u2019s life meant nothing to \u201cthe system.\u201d\u00a0 My rage was stifled into despair by the message that we just didn\u2019t matter.<\/p>\n The rage exploded after I discovered that DIPG is one of the most common pediatric brain tumors, and that brain tumors are the leading cause of death in children with cancer, and DIPG is responsible for 80% of pediatric brain tumor deaths.\u00a0 This year 2016 it was announced that now brain tumors have surpassed blood cancers in childhood cancer incidence, and that DIPG causes more deaths than any other kind of childhood cancer according to Scientific American.\u00a0 So clearly, DIPG is not irrelevant.\u00a0 It\u2019s become obvious that, unlike the ER, saving lives is not the number one priority in our medical research system.\u00a0 But instead, the families of these children, with doctors that have difficulty looking them in the eye, discover the lack of value that the system has for their children\u2019s lives.\u00a0 Don\u2019t get me wrong; the doctors on the front lines are, in many cases, just as devasted to deliver the news as we are to receive it.\u00a0 The few who have devoted their lives to finding solutions for the most deadly pediatric cancers are our modern crusaders.\u00a0 Dr. Michelle Monje of Stanford University, conferring expert for H.Res.586<\/a>, Dr. Mark Souweidane of Weill Cornell, Dr. Girish Dhall of CHLA, Dr. Mark Keiran of Boston Children\u2019s, Dr. Mueller at UCSF and several more in the United States alone.\u00a0 Their work needs more support.<\/p>\n I\u2019m including here the last letter written to President Obama<\/a> in September of 2016, imploring him one last time to consider supporting the issues brought forth in the 2016 H.Res.586<\/a>, the National DIPG Awareness Resolution.\u00a0 Though a House Resolution, it is the only legislation that raises awareness for the urgent need for more NCI research funding for pediatric and low-survival rate cancers.\u00a0 I\u2019m working with Congressman Steve Knight, R-CA-25, to re-introduce the bill in 2017.\u00a0 You will find in him a great champion for our veterans and our children with cancer.\u00a0 The introduction of HRes586 had the support of the Congressional Caucus for Childhood Cancer and was introduced in a bipartisan way.\u00a0 We hope for the crucial awareness of the Trump Administration for the need to prioritize research for our children facing certain death.\u00a0 They have been failed by the current Administration, which sought only to increase private sector incentives rather than take stock of how our tax-dollars for cancer research are spent.<\/p>\n I have been writing to President Obama for 4 years about DIPG, with some replies but no actual acknowledgement of the deadliest pediatric cancer.\u00a0 This last letter was accompanied by a formal report on DIPG<\/a> put together for both a medical and lay audience by Victoria Thomas, RN. MS. \u00a0I don\u2019t like writing this, but more people need to know about the systematic neglect of pediatric cancer by the NCI and the current Administration, and how the children were kicked out of LaFayette Park in 2015 for CureFest with no apology from the President (this burden was left to the Secret Service!), children who had come from all corners of the world to our Nation\u2019s Capital and to the White House as a symbol of hope and were completely discounted, many of them in treatment.\u00a0 Still the White House refuses\u2014refuses!\u2014to \u201cGo Gold\u201d for Childhood Cancer.\u00a0\u00a0 The love of the American People will be unparalleled for you as President with absolute certainty of your word to us in caring for us all deeply, I strongly believe, if you would support the Childhood Cancer Awareness Movement.\u00a0 Any opposing party\u2019s claim to value children more than you do would be put to absolute shame where it belongs.\u00a0 The 4% issue has been consistently ignored, even with the Moonshot Task Force with which I have personally been involved as a local leader, a last resort of hope for the Administration to acknowledge this issue and I was disappointed yet again.<\/p>\n Please, I implore you Mr. President-Elect and those members of your Staff who have a few minutes to spare for tens of thousands of American families who have had to endure, and who continue to endure, this life-decimating experience, to review this information and to resolve to be champions for these kids and their families.\u00a0 I think I will have died have died and gone to heaven and so will millions of others.\u00a0 I find myself exponentially encouraged by your supporters to contribute to the movement of Truth in America which you champion.\u00a0 Thank you for your hard work and thank you for being Our President-Elect. \u00a0Thank you for bringing us\u00a0hope for our children with DIPG and pediatric cancer, everywhere.<\/p>\n Respectfully yours,<\/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\n