{"id":7059,"date":"2020-12-22T18:05:28","date_gmt":"2020-12-23T02:05:28","guid":{"rendered":"https:\/\/jacksangelsfoundation.com\/?p=7059"},"modified":"2020-12-23T05:44:21","modified_gmt":"2020-12-23T13:44:21","slug":"letter-to-speaker-pelosi-dec-22-2020","status":"publish","type":"post","link":"https:\/\/jacksangelsfoundation.com\/?p=7059","title":{"rendered":"Letter to Speaker Pelosi, Dec. 22, 2020"},"content":{"rendered":"

What\u2019s in a day?\u00a0 Everything.\u00a0 For us, absolutely everything.<\/p><\/blockquote>\n

Madam Speaker,<\/p>\n

After 5 years of advocating for the National DIPG Awareness Resolution I\u2019ve discovered that for the third introduction in 2019, the lead sponsor never intended to fight for this bill, or these kids, to be considered with respect to the current legislative protocol regarding exceptions for commemoratives.\u00a0 From what I gathered from her staff, from our request she introduced it for my Congressman who did not return in 2019.\u00a0 We realize the restriction on commemoratives in the House of Representatives is due to excessive overuse of vanity days in the 1990s, and that there has been one exception for a commemorative resolution for Patriots Day, with this same protocol that is on Leader Hoyer\u2019s website, \u201cA resolution of bereavement, or condemnation, or which calls on others to take a particular action, is eligible to be scheduled for consideration.\u201d\u00a0 Bereavement, condemnable neglect of childhood cancer research funding (due to lack of awareness, hence the resolution), and the calling upon government and the private sector to elevate consideration for children and the dying with regard to medical research funding, is the qualification here for H. Res. 114 that one might recognize.<\/p>\n

The idea that one exception for children fighting the deadliest cancer known to mankind would \u201cOpen the floodgates\u201d, the Congresswoman said, and I gathered, echoed your position\u2013\u2013is an emotional expectation rather than a reasonable one.\u00a0 (I had been afforded my very first opportunity to hear from her directly just 2 weeks ago, after 2 years of requests.) The thought that, as there is this opportunity right here, right now, for you and the House to facilitate a shift in attention and awareness to the largely unseen and rampant killer of children, DIPG–a world of suffering and needs unmet–and that you will not do it, is incongruous with the image you present and the accolades you accept as being a great champion for the voiceless and the downtrodden.\u00a0 You are in fact perpetuating the very problem for which the Resolution could help provide a solution.\u00a0 You are insisting that these children are expendable, that their deaths are acceptable, and that we are indeed the country that looks the other way.<\/p>\n

For myself, this process began when I was shown compassion by CA State Assemblyman Scott Wilk in early 2014 when he learned of my son Jack\u2019s story from a foundation leaflet at a Chamber of Commerce event.\u00a0 He insisted the CA Legislature \u201cdo something\u201d for this, producing the 2014 DIPG Awareness Resolution in the State of California.\u00a0 Now my State Senator, he worked with Assemblywoman Christy Smith to pass the 2020 resolution despite Covid-19, knowing that DIPG doesn\u2019t take a vacation from killing children, and to be supportive of this national movement.\u00a0 But the point is, this compassion and concern is what gave me hope in our federal government.\u00a0 When things appear on the national stage, consciousness changes, our world changes.\u00a0 Before that 2014 event I had always wanted a national day for DIPG\u2013such a horrific and unknown quantity sneaks up on families and destroys them\u2026when we could do more\u2026people just don\u2019t know. Senator Wilk gave me hope that it could become a reality.<\/p>\n

And so did your senior staff when you were Minority Leader.\u00a0 The one I met with was truly compassionate and sympathetic, and seemed to indicate that our chances of success with the resolution might be better when the Democrats had the majority. With your office, this proved to be far from the truth.\u00a0 The staff still generously made appointments with us but never with you, even with constituent scientists and distinguished industry leaders, and patients willing and able to speak to the experience.\u00a0 That was terrible, and embarrassing\u2013more for your position as Representative for CA-12 than anything or anyone else.<\/p>\n

Instead of the introducing sponsor’s leading with a support letter to House Leadership to consider this resolution\u2013to which scores of other Members of Congress expressed interest and hope in signing, I was put off for months until I was told that she simply would not lead, but would sign such a letter if another member led with it.\u00a0 Her staff knew very well that only the introducing sponsor can lead with such a letter, but I continued meeting with others to discover that conclusion over time.\u00a0 Of course until it was too late.\u00a0 \u201cJust get more cosponsors\u201d her staff would say to me, \u201cbuild a national coalition.\u201d\u00a0 That was a tall order for a bereaved parent amid a community of other bereaved parents who are definitely NOT inclined to hopeful advocacy.\u00a0 But to date we managed to get 4 seats shy of a House Majority aware of the urgency of DIPG, which speaks volumes on its own.<\/p>\n

We called H. Res. 114 our Moonshot4Kids\u2013harkening to the original moonshot, when America had a clear goal.\u00a0 It was time sensitive.\u00a0 AND we had the desire to out-do the Russians.\u00a0 With strong national resolve we put men on the moon and brought them home safely\u2013with 1960s technology!–and I might add a crew of brilliant mathematicians\u2013all black women.\u00a0 I wouldn\u2019t have known that without having seen \u201cHidden Figures.\u201d\u00a0 Equally imperative to beating the Russians is the need to save these children\u2019s lives.\u00a0 That should be just as urgent.\u00a0 These innocent kids routinely suffer this horrific entombment in an increasingly paralyzed body, retaining cognitive awareness, until respiration ceases.\u00a0 While suffering the side effects of insane medications.\u00a0 While getting turned down from the few experiments open.\u00a0 Phase one experiments.\u00a0 Because no one thinks our children are a worthy investment incentive.\u00a0 That\u2019s the country we are today; that is who we are if we are judged by our actions or lack of actions, as a society.\u00a0 We need to change that.\u00a0 But we can\u2019t change unless PEOPLE KNOW.\u00a0 Awareness is key.\u00a0 What\u2019s in a day?\u00a0 Everything.\u00a0 For us, absolutely everything.<\/p>\n

Most people don\u2019t realize that brain cancer is the most prevalent and deadly form of childhood cancer. They look at kids with leukemia and say, oh, 80% of children survive cancer. Forty years ago it was a death sentence but we targeted it. And yes, thank God adult leukemia research was successfully translated for certain childhood leukemias, with some having a 90% outcome of 5-year survival. But it\u2019s far from the reality most with childhood cancer experience. Most childhood cancers do not have effective therapies or treatments, simply because our investment culture and research industry is not designed to accommodate them. Nowhere is this neglect and the horrors that children are expected to endure more powerfully demonstrated than with DIPG. There is nowhere in the world that you can go to save your child because, \u201cthe numbers aren\u2019t great enough for investors\u201d in the wealthiest country in the world.<\/p>\n

And so, you may still just let this bill die, as intended all along.\u00a0 But we aren\u2019t going away, or disappearing into the background.\u00a0 I might, personally, because I may not be capable anymore of advocacy, and my family is weary of it.\u00a0 But more people are aware, and more people are going to know what happened.\u00a0 Most of us are cynical about interacting with their government for this very reason.\u00a0 I didn\u2019t want to believe it.\u00a0 And I still hope that I am wrong in my assessment due to the fact that I\u2019ve had no direct communication with you\u2013I can only infer by the scraps of information I\u2019ve received here and there.\u00a0 I truly appreciate many things about you and your leadership, but this experience has dashed all of my expectations.\u00a0 I hope to be wrong, and that you do have a heart and will consider letting the House decide if DIPG and the neglect of pediatric cancer research funding is a worthy exception to too many hot-dog or vanity days.\u00a0 Please; these kids want to believe in you.\u00a0 They are facing an early death.\u00a0 For Christmas!\u00a0 Please.<\/p>\n

Please consider Jace Ward<\/a>, a young man advocating for all the little children who cannot speak out, while facing his own uncertain future; and Howard Salmon<\/a>, witnessing the end-stages of his son Liam’s fighting DIPG, and the young mother Cassie Diaz<\/a>, also witnessing her son Jayce struggle to stay alive.<\/p>\n

Thank you.<\/p>\n","protected":false},"excerpt":{"rendered":"

What\u2019s in a day?\u00a0 Everything.\u00a0 For us, absolutely everything. Madam Speaker, After 5 years of advocating for the National DIPG Awareness Resolution I\u2019ve discovered that for the third introduction in 2019, the lead sponsor never intended to fight for this bill, or these kids, to be considered with respect to\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":[240,138,692],"tags":[74,2146,32,2150,2145,9,1698,2141,1901,2148,2147,1744,1012,2135,2149,1769],"class_list":["post-7059","post","type-post","status-publish","format-standard","hentry","category-call-to-action","category-awareness-letters","category-moonshot","tag-assemblyman-scott-wilk","tag-cassie-diaz","tag-childhood-cancer","tag-commemorative-resolutions","tag-congresswoman-speier","tag-dipg","tag-h-res-114","tag-howard-salmon","tag-jace-ward","tag-leader-hoyer","tag-madam-speaker","tag-moonshot4kids","tag-national-dipg-awareness-resolution","tag-patriots-day","tag-protocol","tag-speaker-pelosi"],"_links":{"self":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/7059","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=7059"}],"version-history":[{"count":4,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/7059\/revisions"}],"predecessor-version":[{"id":7064,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=\/wp\/v2\/posts\/7059\/revisions\/7064"}],"wp:attachment":[{"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=7059"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=7059"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jacksangelsfoundation.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=7059"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}