Rally-On for H.Res.69! Help End Obscurity for DIPG and Pediatric Cancer
Rep. Steve Knight at 2016 “Skip for Jack”
February 19, 2017, Agua Dulce, CA—Jack’s Angels Foundation is calling on the Childhood Cancer Community for support in rallying Congress for the 2017 National DIPG Awareness Resolution, H.Res.69. It raises awareness to the realities of pediatric brain cancer, and requests greater consideration for pediatric and high mortality rate cancers with our US government resources for cancer research. Introduced on January 30th to the House Energy and Commerce Committee by Representative Steve Knight (R-CA-25) and co-sponsored by Jackie Speier (D-CA-14), it requires a vote in the House of Representatives only, and designates May 17 as National DIPG Awareness Day.
Jack’s Angels is a 501(c)3 charitable organization in Agua Dulce CA dedicated to awareness and research for DIPG, and advocacy for children with cancer, inspired by the life of little Jack Demeter (8/30/08 – 7/30/12). “The most difficult part of the experience, after being certain he would die, was learning that there was inadequate research funding and activity for DIPG because the relative numbers of DIPG children were insignificant to research investors. The silence and lack of awareness was unbelievable,” says Janet Demeter, founder of Jack’s Angels; “We are asking the greater childhood cancer community for support because the bill was intended in part to exemplify, with the case of DIPG, the marginalization of childhood cancer for research despite the urgent need for solutions for so many children with cancer.”
A Little Local History, Action Days and the Virtual Event
Locally this year, Jack’s Angels “Run the Rocks!” event April 30, 2016 in Agua Dulce CA celebrates community support in raising awareness to DIPG which began with then CA State Assemblyman Scott Wilk (currently CA State Senator) with ACR151 in 2014, then declaring the 4th week of May to be DIPG Awareness Week in California. “Run the Rocks!” consists of a 5k, 10k, 20k Relay for Jack, and a kids 1k, supporting a research project for DIPG at Children’s Cancer Therapy Development Institute in Beaverton, OR. The event heralds May, Brain Tumor Awareness Month, National DIPG Awareness Day, May 17, and celebrates Congressman Knight’s contribution to the DIPG and pediatric cancer community.
medallion design
Registration is now open for “Virtual Relay for Jack”, a running/walking event (5k, 10k, 20k) in which anyone, anywhere in the world, can participate in support of DIPG research, also serves as a rallying point for H.Res.69 for those who wish by encouraging participation on or around the 17th of each month, and of course May 1-17. Runners/walkers are encouraged to post pictures and results on Facebook and share the advocacy campaign for H.Res.69, which can be found at www.hres69.org.
Hosted by Virtual Uberthons and sponsored by Jack’s Angels, those who register receive a commemorative medallion, stop-watch, and official race bib with number. Those acquainted with the “Run for the Whitehouse” events may be familiar with last year’s Virtual Uberthon; Jack’s Angels takes it a step further, asking that people—who are so inclined—help advocate for H.Res.69 on social media with the event, using designated hashtags #CureDIPG, #runforDIPG, #defeat DIPG, and #HRes69. Both the local “Run the Rocks” and “Virtual Relay for Jack” comprise Jack’s Angels Relay for Research 2017, supporting research and advocating for H.Res.69.
Partners in DIPG Awareness; why May 17?
Michael Mosier Defeat DIPG Foundation in Bethesda, MD, has taken on the monumental effort of the “DIPG Across the Map” project with the ambitious goal of creating a proclamation in as many of the states as possible for a DIPG Awareness Day of May 17, 2017. In support of this effort, Jack’s Angels is working with CA State officials for a Proclamation in California, and has adapted last year’s draft of the National Resolution to designate May 17 as National DIPG Awareness Day for H.Res.69.
Intention
For years, parents in the childhood cancer community have been asking for a conversation about United States tax dollars purposed for cancer research, and the annual amount that is designated for pediatric cancer research—a question met by silence or denial of the issue for the most part, Demeter contends.
“We hope DIPG awareness encourages discussion about our federal funds for cancer research, and ultimately, transparency and greater representation of public interest,” continues Demeter as she admits that the Resolution may be edited at Committee vote to please all supporters. She concludes, “we will do what we can for it to succeed in its basic intention, to raise awareness for DIPG, to support those currently fighting, and to honor the tens of thousands of children who have bravely faced an untimely death with little to no attention, or hope. It is written for them. Their lives matter.”
Please sent comments and inquiries to [email protected], or 661-977-3125.
Virtual “Relay for Jack” Information: http://CureDIPG.info
Registration: http://www.virtualuberthons.com/draft-jack-s-angels
“Run the Rocks!” 4/30/2017 in Agua Dulce, CA, information: http://runtherocks.info
Information about H.Res.69: http://hres69.org
Jack’s Angels Inc
32520 Wagon Wheel Rd.
Agua Dulce, CA 91390
661-977-3125 / 818-400-2724 cell/txt
501(c)3 tax ID: 46-1320003
