{"id":4424,"date":"2016-05-11T14:07:26","date_gmt":"2016-05-11T21:07:26","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=4424"},"modified":"2016-05-11T14:07:47","modified_gmt":"2016-05-11T21:07:47","slug":"4424","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=4424","title":{"rendered":"Letter to President Obama"},"content":{"rendered":"

To President Barack Obama:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Thursday May 5, 2016<\/p>\n

I had the pleasure of meeting with Fae Jencks in the Office of Science and Technology this last Tuesday regarding an Awareness Resolution currently in the House of Representatives, HRes586, designating the 4th<\/sup> week of May to be National DIPG Awareness Week.\u00a0 Along with honoring the many very young children who have faced certain death, the gesture would, just as importantly, give hope to those children currently battling the invariably terminal disease, and their families\u2014that the Public would be aware of them, and that there are many of us in the United States fighting against indifference to their suffering.\u00a0 Unfortunately, DIPG is like death-row for kids with cancer.\u00a0 Concerning research, it represents more than one of the frontiers which our current knowledge of science, medicine and oncology face.\u00a0 Consistently, with what parents and DIPG organizations have been able to fund, the research proves a valuable source of new knowledge and discoveries for many areas of oncology currently needing support.\u00a0 The argument that it would not be a worthy investment of research funding has questionable validity.\u00a0 I believe that there is no argument justifying indifference to these children and their families, except perhaps political ones which are notoriously void of human value, or merit, except in those cases to avoid war or hardship to the American People.<\/p>\n

Equally important is the awareness which HRes586 raises to the urgency of need for this research, and the conversation it begins, which the HR bills for childhood cancer do not do directly, for elevated consideration for low-survival-rate cancers and years of life lost in the NCI research grant process.\u00a0 The NIH definition of a disease with less than 200,000 per year incidence as \u201crare\u201d is the only definition of which I\u2019m aware.\u00a0 The context of this can easily be manipulated and applied erroneously, as it has been for years (for example in the media DIPG is referred to as a \u2018very rare brain tumor\u2019) to the end of ignoring the urgency of the needs<\/em> of some of our most vulnerable citizens; our children with cancer.\u00a0 DIPG is one of the most common pediatric brain tumors, and is responsible for roughly 80% of pediatric brain tumor deaths, the leading cause of death in children with cancer; it is hardly irrelevant.\u00a0 I do realize I\u2019m repeating myself with this from my previous letter to you, but it\u2019s import warrants repetition.<\/p>\n

 <\/p>\n

I am appealing to you and Vice President Biden because an Administrative Proclamation would be of the most immediate and substantial help.\u00a0 I can think of no greater honor and hope for our children with brain tumors in our Great Country; one thing they have very little of is the time that it will take to pass the House and introduce counterpart legislation in the Senate.\u00a0\u00a0 Ms. Jencks let me know that aside from support in the House and potential support in the Senate, support from DIPG and childhood cancer organizations would be considerable, also, in a decision for a Proclamation for a National DIPG Awareness Week.\u00a0 And so, I have included a list of such organizations, their webpages, some devoted to HRes586.\u00a0 Also included are the names of the Congressional Representatives in favor of the Resolution, as well as the Senators supportive of counterpart legislation.\u00a0 My visit this last Monday and Tuesday to Washington was important to clearly identifying some of them\u2014at least those with whose staff I had the opportunity to confer; there weren\u2019t that many with whom I could meet in just 2 days unfortunately, but the phone calls will continue.<\/p>\n

I will preface my final and brief digression here with the fact that I am a huge fan of \u201cMake A Wish\u201d Foundation and am supportive of them.\u00a0 However, every now and then mistakes can be made.\u00a0 In our case, for my 3 year-old son Jack, I thought there would be no greater honor my son could experience in his very short life than to travel to our Nation\u2019s Capital and meet the President of the United States.\u00a0 I was told by a Make a Wish representative that they had never seen a case where the first request was not granted, and I had heard that there had been another DIPG child in 2009 who had had the honor of meeting you, so this was our request.\u00a0 It was denied, and my most horrible mistake was to have told little Jack that he would be able to meet you.\u00a0 He had been so excited!\u00a0 I was crushed; I wanted this so much for him.\u00a0 He was so incredibly smart\u2026 way beyond his years.\u00a0 He was already doing 10th<\/sup> grade geometry and the alphabet in 3 languages.\u00a0 I wanted him to meet another really, I mean really, smart guy!!<\/p>\n

Thank you for considering this.\u00a0 I hope that I will be informed of any further information or work I need to do to support the possibility of a Proclamation.\u00a0 I am not well-versed in the ways our Government branches interact but I hope, I truly hope, that where you have the privilege to help people in our Great Country, it would be afforded to our kids bravely fighting DIPG and their grief-stricken families, right now.\u00a0 Thank you so much for your time and consideration.<\/p>\n

With deep gratitude, I remain<\/p>\n

Respectfully yours,<\/p>\n

 <\/p>\n

Janet Demeter<\/p>\n

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

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

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

661-977-3125, 818-400-2724 mobile<\/p>\n

Jacksangels1@gmail.com<\/a><\/p>\n

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

 <\/p>\n

List of Organizations Supportive of HRes586:<\/p>\n

 <\/p>\n

Jack’s Angels Foundation for DIPG Advocacy and Research<\/strong>, 32520 Wagon Wheel Rd., Santa Clarita, CA 91390\u00a0http:\/\/jacksangels.org\u00a0<\/a><\/p>\n

 <\/p>\n

Childhood Cancer Talk Radio<\/strong>, Toginet.com\u00a0http:\/\/cctalkradio.org<\/a><\/p>\n

 <\/p>\n

Smashing Walnuts Foundation<\/strong>, Ellyn Miller, mom to Gabriella Miller of the Gabriella Miller Kids First Act, Leesburg VA 20178<\/p>\n