With a focus on brain cancer, the leading cause of cancer-related deaths in children and also the most prevalent of childhood cancer subtypes, the #Moonshot4Kids “Rally for Our Children” virtual media event on Friday, September 25 beginning at 8:30 pm EST brought together researchers in pediatric oncology, members of Congress, advocates for children with cancer, pediatric brain cancer families, and childhood cancer survivors to celebrate progress in the space of childhood cancer awareness, and to support needed further progress in raising awareness to the urgent need for greater research support for childhood brain cancer. The remastered video presentation from the live event will be re-aired on the facebook page of Childhood Cancer Talk Radio on Friday, Oct. 2 at 8pm Eastern Standard Time, and on the website of DIPG Advocacy Group.
The event was hosted by DIPG Advocacy Group in a proclaimed attempt to salute the normally in-person CureFest events in Washington DC traditional to the third week and weekend in September, Childhood Cancer Awareness Month. Formed in 2017 by Janet Demeter, with Jack’s Angels in Agua Dulce, CA, Elizabeth Psar, Julia Barbara Foundation in Knoxville TN, and Paul Miller, childhood cancer advocate from Littleton, CO, the group supports the National DIPG Awareness Resolution in US Congress, which alerts the world to the devastating, hidden experience of DIPG and childhood brain cancer to the end of attracting financial and scientific support to accelerate research into cures. The Resolution suggests prioritization of the young and those facing certain or probable death for research funding. “The deaths are horrific,” states Demeter candidly, “and we have the technology today to save them, but lack adequate awareness in Congress and with the greater public to this urgent, unmet need.”
Physician-researchers speaking live or in a pre-recorded presentation included Dr. Charles Keller, Children’s Cancer Therapy Development Institute(Beaverton, OR); Dr. Adam Resnick, Children’s Hospital Philadelphia, Children’s Oncology Group, Children’s Brain Tumor Tissue Consortium; Dr. Adam Green, Children’s Hospital Colorado, University of Colorado, Denver; Dr. Michelle Monje, Stanford University, Lucile Packard Children’s Hospital; Dr. Michael Prados, UCSF, Benioff Children’s Hospital; and Dr. Sabine Mueller, UCSF, University of Zurich Children’s Hospital. Dr. Mueller was the conferring expert on the first Resolution to raise awareness for DIPG and pediatric brain cancer in a state legislature, thanks to California Assemblyman Scott Wilk and CA Senator Steve Knight in 2014. Dr. Michelle Monje and Dr. Adam Green are the conferring experts for the National Resolution in Congress today, H. Res. 114.
House Resolution 114 is a way for me, my peers who have passed before me, and my peers who are currently fighting their fight, to be seen by our fellow members of society
Grace Wethor –DIPG Survivor, Los Angeles CA
The forum welcomed a number of legislative measures supporting increased research into childhood cancer and supporting afflicted families. Notable childhood cancer advocates and foundation leaders included Keith Desserich, founder of The Cure Starts Now Foundation (Cincinnati OH); Mina Carroll with Storm the Heavens Foundation (Philadelphia, PA); Ellyn Miller, Smashing Walnuts Foundation (Leesburg, VA); Annette Leslie, The Carson Leslie Foundation (Dallas, TX); PNOC Foundation (San Rafael, CA); Elena Gerasimov, Kids v. Cancer (Washington DC); Sarah Milberg, Director of Government Relations, St. Baldrick’s Foundation(Monrovia CA); Jonathan Daniels, Senior Manager for Policy & Advocacy, Cystic Fibrosis Foundation (Bethesda, MD); Rachna Prasad, Mithil Prasad Foundation (San Jose, CA); Jenny Mosier, The Michael Mosier Defeat DIPG Foundation (Bethesda, MD); Carrina Waneka, The Cure Starts Now Colorado; Elizabeth Psar, Julia Barbara Foundation, DIPG Advocacy Group co-founder(Knoxville, TN); Paul Miller, childhood cancer advocate, DIPG Advocacy Group co-founder(Littleton, CO); the DIPG Dad’s Facebook Group; Katherine Bader, philanthropist, childhood cancer advocate, DIPG Advocacy Group outreach(Rhineland, MO); and Gerry Tye, childhood cancer advocate, founder, DIPG Research Group, DIPG Advocacy Group–international liaison, in Sydney, Australia.
The bi-partisan group of contributing members of Congress included: Rep. Mike Garcia (R-CA-25), Rep. Brian Fitzpatrick (R-PA-1), Rep. Jennifer Wexton (D-VA-10), Rep. Mike Kelly (R-PA-16), and Rep. G.K. Butterfield (D-NC-1), supporting the Creating Hope Reauthorization Act, the STAR Act, The Gabriella Miller Kids First Research Act 2.0, The Fairness to Kids With Cancer Act, and the National DIPG Awareness Resolution. Interspersed amid the speakers were short video submissions from a number of DIPG families, mostly in the USA with some international participation from France and Australia.
Most notable were the submissions from DIPG and other childhood cancer survivors including Grace Wethor, DIPG survivor from Los Angeles, CA, Nicole Puglisi from Clifton, NJ, and neuroblastoma survivor Danielle Cloakey, from Cashmere, WA with the express purpose of supporting the House Resolution 114 for DIPG, which is responsible for the majority of pediatric brain tumor deaths annually, representing a generally hidden, unseen world of fear and suffering. “House Resolution 114 is a way for me, my peers who have passed before me, and my peers who are currently fighting their fight, to be seen by our fellow members of society,“ states Ms. Wethor, an 18-year-old actress and author living under the shadow of DIPG.
“We took the CureFest opportunity to raise awareness to the fact that brain cancer is the leading cause of cancer-related death in children, and is also the most prevalent subtype, or most common diagnosis. By calling out DIPG–the deadliest type–by name, we hope to accelerate progress in research in treatment to save lives, and also in recognizing the common symptoms of brain tumors which are often overlooked, even by clinicians,” notes Elizabeth Psar, co-founder of DIPG Advocacy Group. “With awareness, we can save lives today.”
