Taking it to the Hill: DIPG Advocacy Group Promotes H.Res.69

H.Res.69, the DIPG Awareness Resolution, is a simple House Resolution which raises awareness to the realities of diffuse intrinsic pontine glioma, perhaps the most-deadly pediatric brain cancer.  It also raises awareness to general pediatric cancer and brain cancer statistics, the leading cause of death in children with cancer, and the general inadequacy of our medical research system to find solutions for them after more than 50 years of clinical knowledge of the disease in the medical community.
Congressman Steve Knight (R-CA-25) introduced the bill in January of 2017 along with co-sponsor Jackie Speier (D-CA-14), after working extensively since 2015 as Congressman and in 2014, as CA State Senator with Janet Demeter of Jacks Angels Foundation (Agua Dulce, CA), a pediatric brain cancer awareness and research organization with a focus on advocacy for children with cancer.
The experience of a DIPG diagnosis, which effects mostly young children, is often too devastating for the families to recover, much less take up advocacy work.  It is only very recently–in the last five years or so with the rise of social media–that the DIPG community has become more visible in the childhood cancer world, and the parents dedicated to funding DIPG research over the last decade through the DIPG collaborative and other organizations committed to research that there has been some progress in the research.  Though standard treatment protocol and the terminal prognosis have not changed, researchers Dr. Michelle Monje-Deissiroth of Stanford University is hopeful for new and auspicious pathways opening up in this area of research, due to this funding by bereaved parents.
Dr. Monje-Deissiroth and Dr. Adam Green of the University of Colorado at Denver, both highly respected scientists and researchers in pediatric neuro-oncology, appear in this week’s edition of Childhood Cancer Talk Radio, a weekly internet radio show on TogiNet.com on Thursdays at 4 p.m. Eastern time hosted by Jack’s Angels Foundation President Janet Demeter.  WJLA’s award winning journalist Jay Korff appeared recently on the November 16 airing of Childhood Cancer Talk Radio to discuss his new film Endure which documents the 200 mile trail race of childhood cancer activist Tom Mitchell of the Still Brave Foundation in Burke, VA.
Researchers Monje-Deissiroth and Green, in the December 7 episode, discussed DIPG and the importance of H.Res.69, having both been conferring experts for the general statistics cited in the legislative text.  Also appearing is Cecilio Torres of the Gabriella’s Smile Foundation in San Antonio TX, giving the parental perspective on the DIPG experience, as well as Paul Miller, long-time advocate for children with cancer with St. Baldrick’s Foundation, who is a father but has not lost his child to cancer.  Host Janet Demeter is a DIPG parent herself, and has taken on the cause of exemplifying the marginalization of pediatric cancers with DIPG, as most are deemed rare and receive little, if any, research funding.
The DIPG Advocacy Group, organized by Jack’s Angels Foundation, is comprised of 5 DIPG parents and 1 concerned parent-citizens including Janet Demeter (CA), Paul Miller(CO), Bill Kohler(PA), Elizabeth Psar(TN), and schedule-permitting attendees Jonathan Agin and Ellyn Miller, both from Virgina, is visiting the House Office Buildings on Capitol Hill this week.  On Wednesday, Thursday, and Friday, the group attempts to educate Representatives to the tragedies which repeatedly occur for these families because, “the numbers aren’t great enough for investors, “ in the hope of gaining more support for H.Res.69, and ultimately, pediatric cancer research.  Other legislation supported by this group is H.R.2008, the Gabriella Miller Kids First Research Act 2.0, and the STAR Childhood Cancer Act.
For more information about H.Res. 69 and its beginnings, visit www.hres69.org.