Real-Time May Day on Capitol Hill: DIPG Advocacy Group’s Relentless Fight for Children with Brain Cancer In a Culture of Indifference

It’s not such a rare cancer in children; it’s the 2nd most common variety of pediatric brain cancer, and God help you if it crosses your path.

WASHINGTON (PRWEB) MAY 01, 2019

Imagine hearing, after the brief onset of some unusual symptoms, that your child is going to die, that there are no viable treatments and you must take him or her home to “make memories.” For all practical purposes, he or she has seemed a healthy child; but the MRI shows a diffuse intrinsic pontine glioma, four dreaded and dark words for some unknown and terrifying presence now ruthlessly asserting itself into your reality.

Roughly 200-400 children are diagnosed with DIPG annually in the United States and it is considered a rare disease, as is every form of childhood cancer, and its relatively small patient population is generally a wholesale excuse for ignoring it amid the flurry of the medical research industry. However, cancer is the leading cause of death in children in the United States after accidents and injuries, brain cancer topping the list for pediatric cancer mortalities, and DIPG is responsible for the majority of those deaths. It’s not such a rare cancer in children; it’s the 2nd most common variety of pediatric brain cancer, and God help you if it crosses your path.

Janet Demeter, Founder of Jack’s Angels in Agua Dulce, CA, and Co-founder of the DIPG Advocacy Group, lost her 3-year old son Jack to the disease in 2012.

“My main motivation for working for this cause has always been the experience we had, out of the gate, hearing that there were no solutions for my son because ‘the numbers aren’t great enough for investors’–which was a clear message at the time. My son’s life had no value to the medical research system in place. I didn’t know that it was one of the most common and deadliest forms of childhood brain cancer, let alone pediatric cancer. You can imagine how impossibly enraged I was as I discovered these facts, and a world-wide community of others who had had the same rude awakening.”

The week of May 1, 2019, DIPG Advocacy Group is targeting meetings with both Members of the House of Representatives and the Senate, bringing information and support from constituents and evidence of the vast number of affected families across the United States. House Leadership and members of the Energy and Commerce Health Subcommittee are especially important as these members decide, ultimately, the fate of H. Res. 114. In its language, it indicates the need for greater research funding for pediatric cancers in general and begs greater consideration for years of life lost and the mortality rate of any given type of cancer, as well as designating the Awareness Day May 17 in Brain Tumor Awareness Month.

California was the first state to have an Awareness Resolution for DIPG in 2014, due to the compassion of state legislators Scott Wilk and Steve Knight, at the time Assemblyman and Senator respectively. When Steve Knight became Congressman of California’s 25th District in 2015, he worked with Jack’s Angels to author the national DIPG Awareness Resolution, H. Res. 586 in its first iteration to the 114th Congress in January 2016, and then again to the 115th Congress in January of 2017. Jackie Speier (D-CA-14) introduced the latest iteration of the Resolution, H. Res. 114, in February of 2019, along with David Joyce (R-OH-14).

“It was important to me that we raise awareness to the lack of research attention to pediatric cancer in general, as this was the larger problem of the experience of DIPG. In this way DIPG is probably the best ambassador for the disease, in that it’s a powerful example of the marginalization, the utter lack of hope, and the tragedy which most of us all endure because as a society we simply don’t invest in the research,” according to Demeter.

The cause of DIPG awareness has also been championed by Jenny Mosier of the Michael Mosier Defeat DIPG Foundation in Bethesda, MD. The charity has risen to prominence in the world of DIPG research funding, and has since 2016 helped encourage over 30 States (31 in 2018) have a DIPG Awareness gubernatorial Proclamation or Legislative Resolution on May 17, the day that Michael Mosier succumbed to the disease in 2015. May 17 is also designated in H. Res. 114 as a united effort for DIPG awareness across the United States.

Co-founder of the DIPG Advocacy Group, Elizabeth Psar of Julia Barbara Foundation in Knoxville, TN, also lost her daughter Julia on that day in 2016. The foundation is part of a large research funding network which has grown immensely over the last 10 years, the DIPG Collaborative founded by The Cure Starts Now, a powerful and effective fundraising charity for DIPG, it’s headquarters based in Cincinnati, OH, and led by Keith and Brooke Desserich in honor of their daughter Elena. Their work covers a vast network of children and their families, and the establishment of the DIPG Registry, an international collaborative effort by physicians and researchers from North America, Europe, and Australia to centralize and standardize the collection of clinical data and tumor samples from DIPG patients. The goal of this effort is to support innovative research and ultimately find a cure for DIPG. Where industry and the government done left off, parents are shouldering the burden of the research funding.

“Funding pediatric cancer research should be a no-brainer, but there’s huge resistance to raising awareness about the inadequacies of our system in attending to the unmet needs of children; the missing ingredient has been public awareness. It’s our greatest hope that this Awareness Resolution will bring a demand for greater transparency and accountability for the decisions made with our tax dollars for research, but equally, to alert the public and the philanthropic community about the urgency of this need. Our children ought to have hope, to know that our society cares,” adds Demeter.

Indeed, there has been no change in either the standard treatment nor the terminal prognosis for DIPG since Neil Armstrong’s daughter died of it in 1962. DIPG Advocacy Group ascribes the social media hashtag #Moonshot4Kids to H. Res. 114, as it was first introduced the day after Vice President Biden’s Moonshot intiative, and also to honor Karen Armstrong and the Armstrong family, and the legacy of one of our greatest American heroes.

The group on Capitol Hill this week includes Janet Demeter of Agua Dulce, CA, Elizabeth Psar of Knoxville, TN and her 8-year-old son William, Paul Miller of Littleton CO, longtime advocate for St. Baldrick’s Foundation, and Melany Knott of Mt. Airy MD, who just lost her daughter Kaisey to DIPG last year. H. Res. 114 would need 218 signatures in the House of Representatives to pass automatically; it does qualify for a House vote under the suspension of rules process, due to its subject matter of bereavement and the need for remedial action. A Senate Resolution will be introduced by Senators Rubio (R-FL) and Jack Reed (D-RI) in mid May to be immediately hotlined for a vote. For more information, visit http://www.dipgadvocacy.org.

References

-2016 CDC Report at the Summit for the Childhood Cancer Caucus, Visitors Center, The Capitol, Washington DC 
-The American Childhood Cancer Organization 
-H. Res. 114, Dr. Michelle Monje, Stanford University, Stanford, CA; Dr. Adam Green, University of Colorado Denver, Aurora, CA, conferring DIPG experts for the DIPG Awareness Resolution

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