Virtual Running Event Benefits Pediatric Cancer Research and offers Global Support for the 2017 National DIPG Awareness Resolution

From anywhere in the world, all are welcome to participate in the “Virtual Relay for Jack” event, supporting a research project for DIPG, the leading cause of death in children with brain cancer.  The event also provides a rallying point for the groundbreaking National DIPG Awareness Resolution which addresses the inadequacy of pediatric cancer research funding, and asserts that the values of saving lives, and our children, need to be reflected in the medical research system .

All runners, advocates and athletes alike are welcome to participate in “Virtual Relay for Jack”, from anywhere in the world, on their own time, in support of pediatric cancer research and the 2017 National DIPG Awareness Resolution authored by Congressman Steve Knight(R-CA-25), to be introduced to the 115th Congress January 30th.  Jack’s Angels Foundation of Agua Dulce, CA, the Resolution’s instigator, will be working hard to advocate for its passage and to raise awareness for the urgent need for greater pediatric cancer research funding in the medical research system today.   The Resolution designates May 17 as National DIPG Awareness Day in collaborative support of the Michael Mosier Defeat DIPG Foundation (Bethesda, MD) its 50-State Project this year called “DIPG Across the Map”, having the goal of a State Proclamation in as many States as possible for May 17, 2017 as DIPG Awareness Day.  Jack’s Angels is working on this project for California with CA State Senator Wilk(Sen-21) and Assemblyman Acosta(A-38).

Jack’s Angels Relay for Research 2017

The beautiful, but short life of little Jack Demeter (8/30/08 – 7/30-12) inspired the mission of Jack’s Angels Foundation:  pediatric brain cancer awareness and research, and advocacy for children with cancer.  The 2017 Jack’s Angels Relay for Research, which includes “Run the Rocks!” April 30, 2017 in Agua Dulce, CA and “Virtual Relay for Jack”, with registration opening 1/17/2017, a companion virtual event with VirtualUberthons.com in which one can participate from anywhere around the world, supports a research project for DIPG called “Jack’s 12 Pebbles” at the Children’s Cancer Therapy Development Institute (cc-TDI.org)  Dr. Charles Keller, Scientific Director, leads the effort for this project and involves a student team at the Oregon Institute of Technology.  The project is part of the greater Combination Therapy Research Project for DIPG with the Children’s Oncology Group.

Virtual Relay for Jack participants receive a unique medallion and sash, stopwatch, and an official number, and are encouraged to post selfies and results with the hashtags #CureDIPG, #RunforDIPG, and #51717 on VirtualUberthons.com, and also on Jack’s Angels Facebook pages.  Although participants can schedule their event as they please, anytime from now until May 17, they are asked to consider running/walking the 5k, 10k, or 20k distance on or between April 30th and May 17th, in support of the Resolution and the first official National DIPG Awareness Day, and to celebrate May, Brain Tumor Awareness Month.   Jack’s Angels Foundation is planning “action days” for supporting the Resolution and the event during the week of the 17th of each month through May, sharing information about contacting Members of Congress, the President, and encouraging participation in the event.

“Run the Rocks!” April 30, 2017

Vasquez Rocks County Park, Agua Dulce, CA

Relay for Jack 2016: J. Demeter,Wendy Heinrick, Congressman Knight, CA Assemblyman Wilk and Santa Clarita Mayor Pro-tem Acosta

Jack’s Angels Foundation’s local event and companion to Virtual Relay for Jack, “Run the Rocks!”,  April 30th in Agua Dulce, CA, consists of a 5k trail walk and run, 10k run(canyon course), 20k Relay for Jack, and kids 1k race at Vasquez Rocks County Park, with registration already open at Active.com.  It is a celebration Congressman Knight’s leadership for DIPG and childhood cancer awareness, as well as the supportive work of CA State Senator Wilk(2017Senate-21) and CA State Assemblyman Acosta(2017Assembly-38) in the California Legislature, part of a massive simultaneous 50-State Project called “DIPG Across the Map,” initiated by the Michael Mosier Defeat DIPG Foundation, founded in 2015 upon the tragic death of Michael Mosier on May 17 of that year, quickly became in 2016 a high-level contributor to the DIPG Collaborative, a group of organizations devoted to DIPG research led by The Cure Starts Now Foundation.     The January 12, 2017 installment of Childhood Cancer Talk Radio was devoted to the “DIPG Across the Map” project.

Jenny Mosier, Executive Director of the Michael Mosier Defeat DIPG Foundation in Bethesda, MD, leads the “DIPG Across the Map” program designating, with volunteer efforts, May 17, 2017 in as many State Proclamations as possible.   Jack’s Angels is collaborating in the California effort, with 35 other states committed to the work so far.  The Michael Mosier Defeat DIPG Foundation has been crucial to popular support for the National DIPG Awareness Resolution, and produces their own May 28 event, the SuperHero 6k Sprint, with its own virtual component this year.  Jack’s Angels encourages participation in both events in a bi-coastal pow-wow for DIPG and pediatric cancer awareness. (Team Big Hero 6 is #1 fundraiser in May of 2015 at the “Race for Hope” in Washington DC, benefiting brain cancer research, pictured left)

DIPG Research at CC-TDI

“Virtual Relay for Jack” event proceeds are committed to a research project for DIPG at cc-TDI, the Children’s Cancer Therapy Development Institute, Dr. Charles Keller, Scientific Director, in Beaverton Oregon.  “Jack’s 12 Pebbles”, as the project is called, will also involve the Oregon Institute of Technology’s top student team, providing an innovative technology model for combination therapy determination for DIPG—one of the most chemotherapy-resistant cancers.  “The project needs roughly $100,000 to get past the prototype phase, so among other sponsors, we are seeking the right athletic company to provide a promotional shoe for the event to help raise funds for the research project,” adds Demeter.

The 2017 Resolution, and “DIPG Across the Map”

On my visit to the Monje lab 9/10/2015

Janet Demeter worked closely with Congressman Knight’s office along with conferring experts Dr. Michelle Monje of Stanford University, Dr. Adam Green of the University of Colorado, Denver, and the Office of Advocacy Relations (OAR) at the National Cancer Institute (NCI) in 2015-2016 to craft the Resolution to exemplify the neglect of all pediatric cancers with the powerful example of DIPG, which has seen no progress in 50 years, and to ask boldly that pediatric and high mortality rate cancers have greater consideration for funding in our medical research system.

“DIPG Awareness has been extremely hard-fought, and needs support,” explains Demeter.  In 2014, then CA State Assemblyman Scott Wilk introduced ACR151, which designated the 4th week of May as “DIPG Awareness Week” in California, and honored the work of Jack’s Angels Foundation, at which time Steve Knight was a CA State Senator.  “This was the work of angels; it’s because of chance meetings that the compassion of now State Senator Wilk literally set in motion this pathway for DIPG Awareness in California for Jack’s Angels, and now with Congressman Knight in Congress.  I couldn’t have solicited that,” Demeter insists.

The Pennsylvania Legislature followed suit with a Proclamation for DIPG on Feb. 22, 2015, in memory of the late Joey Fabus, and then in 2016, both Maryland and Pennsylvania witnessed Gubernatorial Proclamations for DIPG Awareness on May 17, with Michael Mosier Defeat DIPG Foundation and Aiden’s Avengers, respectively.

“Now with the “Across the Map” Project of Michael Mosier Defeat DIPG Foundation and all the activity that’s been created, I think we have a chance.  Before, struggling on our own, each of us DIPG advocates remotely it was very difficult, and too much of a burden for emotionally decimated parents to shoulder,” says Demeter about her advocacy work in 2015-16.  “DIPG is a particularly isolating experience.  We have a chance with the National Resolution and “DIPG Across the Map.”

Demeter speaking at the Cancer Moonshot Summit

“The Monster,” DIPG. Click for DIPG Report by Victoria Thomas, MS, RN

The 2017 National DIPG Awareness Resolution as such is in a unique position to make a case for DIPG and pediatric cancer research funding in a non-partisan, non-controversial manner; it is the only legislative text (even among HR bills for childhood cancer such as the STAR Act and RACE for Children Act) which directly addresses the fact that less than 4% of our US Government budget for cancer research benefits pediatric cancer, something advocates and parents have been strongly complaining about for the past few years to apparently deaf ears.  “Even the Moonshot Initiative falls short for our kids,” remarks Demeter, who hosted a Regional Moonshot Summit June 29, 2016 in Santa Clarita, CA, “while there was welcome discussion about creating more incentives in the private sector, we have to fight tooth and nail for the issue of government funds and prioritizing children to be in the conversation.”

Look for this runner 1/30, 2/17, 2/25, 3/17, 4/17, 4/30, 5/17

Many think that the American Cancer Society (ACS), often using children in their solicitations, would contribute more than 2% of their research, but this is wishful thinking.   According to distinguished researcher Dr. Charles Keller, co-chair of the brain tumor developmental therapeutics committee (CNS-DVL) of the Children’s Oncology Group, it is the efforts of small, parent-initiated foundations like Jack’s Angels which fund most of the research for childhood cancers like DIPG, banding together for a common cause.  “This puts an enormous burden on bereaved families; I wanted to be sure the Resolution would address our values, saving lives and children,” insists Demeter, who has been running for DIPG Awareness since 2014, corresponding with President Obama without response-acknowledgment of DIPG specifically, and rallied in 2015 for the first version of the Resolution which did not get the necessary attention to pass.  “Getting recognition for DIPG and pediatric cancer has been like pulling teeth,” she continues, “when the leading tendency in Government is to resist giving attention to any one disease.   But with most states saying “Yes” across the map and support of the National Resolution from this event, we’ll be on our way!–Run virtually with us!  It’s fun!”

To sponsor or participate in the event, visit www.CureDIPG.info, or contact Jack’s Angels Foundation at jacksangels1@gmail.com.  For more information about Childhood Cancer Talk Radio, visit www.cctalkradio.org.

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