![\"WHrun5.0\"](\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2016\/04\/WHrun5.0-198x300.jpg\")
<\/a>Everett and Janet in Washington DC<\/p><\/div>\n
April 19, 2016 Santa Clarita, CA\u2014<\/em><\/strong>Ultra-distance runner and activist for children with cancer Everett Smith of Redlands, CA and Janet Demeter of Jack\u2019s Angels in Agua Dulce, CA team up to promote \u201cAction Days\u201d for HRes586 in support of children currently afflicted with DIPG and their families.\u00a0 Beginning in Bakersfield, CA at Juliet Thorner Elementary School to honor Nathan Street and N8 pediatric brain tumor foundation, the 200-mile epic run passes through Lancaster, Agua Dulce\u2014home of Jack\u2019s Angels, Newhall, through the Fernando Valley using the Topanga Route to Malibu, hugging the coastline to finish in Huntington Beach in honor of the McKenna Claire pediatric brain tumor foundation, at Mama\u2019s Restaurant on 39.\u00a0 The children Nate, Jack, and McKenna Claire who inspired the honored foundations all perished to DIPG, diffuse intrinsic pontine glioma.\u00a0 HRes586 designates the 4th<\/sup> week in May, Brain Tumor Awareness Month, to be National DIPG Awareness Week.<\/p>\n \u201cIt\u2019s literally cancer\u2019s death-row for children,\u201d says Janet Demeter, President of Jack\u2019s Angels Foundation about DIPG, \u201cthere have been no solutions for these children since Neil Armstrong\u2019s daughter died of it in 1962.\u201d\u00a0 Brainstem gliomas are the leading cause of death in children with cancer, and DIPG is responsible for roughly 80% of those mortalities; it is perhaps the deadliest pediatric cancer.\u00a0 \u201cI call DIPG the \u2018Great Embarrassment\u2019 to our medical research system,\u201d says Demeter, \u201cwhich has for decades neglected these children due to the projected idea that it won\u2019t be immediately profitable to invest in the research.\u00a0 And so, for a long time, families have been hearing there are no solutions because their children\u2019s lives basically don\u2019t matter to the system, even with our tax-dollars for cancer research with NCI.\u201d\u00a0 Action Days for HRes586, April 20 through May are the collaboration of Jack\u2019s Angels Foundation, Michael Mosier Defeat DIPG Foundation, and the Children\u2019s Cause Cancer Advocacy both in Washington, DC.<\/p>\n HRes586 has its beginnings in California, and in Santa Clarita, with CA State Assemblyman Scott Wilk\u2019s Resolution for DIPG, designating the 4th<\/sup> week in May 2014 as DIPG Awareness Week in California.\u00a0 Then State Senator Steve Knight was aware of the advocacy work of Jack\u2019s Angels and was very receptive as the new Congressman for the 25th<\/sup> District of California to this national ambition for DIPG Awareness.\u00a0 Knight joined the Congressional Caucus for Childhood Cancer and endorsed the STAR Act legislation, also pending in the House of Representatives, last September 2015.\u00a0 At that time his office began working with Jack\u2019s Angels and conferring DIPG expert Michelle Monje of Stanford, University on the writing of HRes586, unofficially titled \u201cChad and Jack\u2019s DIPG Resolution,\u201d for Chad Carr of Ann Harbor, MI and Jack Demeter of Agua Dulce, CA, respectively, to honor the many thousands of brave children departed to DIPG with little to no fanfare.<\/p>\n Congressman Steve Knight, Everett Smith and other activist runners \u201cTattoo Tom\u201d Mitchell, Becky Moss Mudd, Brian Jones, and John McKay will be featured on the April 21 edition of Childhood Cancer Talk Radio, hosted by Demeter on TogiNet.com at 1pm Pacific, 4pm Eastern time.\u00a0 Billy Malone, candidate for Los Angeles County Supervisor 5th<\/sup> District, will be joining the Run for HRes586 with his own 300 mile \u201cWalk in Your Shoes\u201d through Santa Clarita on April 22 when the Run passes through.<\/p>\n For maps and schedules for each day of the Run for HRes586, or to support the run, visit www.runforDIPG.org<\/a>, or visit Jack\u2019s Angels main website at www.jacksangels.org<\/a> for this and information on the pioneering \u201cRelay for Jack\u201d, May 28 at Vasquez Rocks County Park in Agua Dulce, CA supporting an innovative research project for DIPG.<\/p>\n Volunteer Staff<\/p>\n Jack\u2019s Angels Foundation<\/p>\n 32520 Wagon Wheel Rd.<\/p>\n Santa Clarita, CA 91390<\/p>\n 661-977-3125<\/p>\n![\"chadandjackslabel1\"](\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2016\/02\/chadandjackslabel1-1-200x300.png\")
<\/a>Authored by Congressman Steve Knight (R-CA-25) and co-sponsored by Representative Jackie Speier (D-CA-14) HRes586 asks for more consideration for low-survival-rate cancers and years of life lost in the research grant process with the National Cancer Institute (NCI).\u00a0 Currently, only 4% of NCI\u2019s research budget is designated towards pediatric research.\u00a0 \u201cThis has been a big issue nationally with the Childhood Cancer Community; the experience of DIPG exemplifies the effect of this neglect for pediatric research in a powerful way.\u00a0 These children must bravely face their death in full awareness of what\u2019s happening to them with their families watching on helplessly; to allow this neglect to continue would be unconscionable.\u201d\u00a0 Demeter and Smith hope to raise awareness for HRes586 so that all may encourage their friends and family across the United States to learn about it, and take action to support National DIPG Awareness Week by going to www.HRes586.com<\/a>.<\/p>\n