Oct. 31, 2020, Santa Clarita, CA– DIPG Advocacy Group, a coalition of pediatric brain cancer foundations and individual childhood cancer advocates, formed in late 2017 expressly for the purpose of supporting the National DIPG Awareness Resolution in the House of Representatives. Currently designated H. Res. 114, the resolution was first introduced in 2016, again in 2017, and finally in the 116th Congress on February 8, 2019 by Jackie Speier (D-CA-14) and David Joyce (R-OH-14) to draw attention to DIPG, pediatric brain cancer, and the chronic lack of adequate funding into pediatric cancer research for effective treatments.
Currently, the Resolution has the support of over 180 lawmakers signed as cosponsors, and the group’s goal is to reach 218 cosponsors by December 1st as a point in their case to House leadership. “Sadly, we have to make the case that our children are a worthy exception to a rule in the House restricting due process for resolutions which designate a ‘commemorative’ day, because of excessive overuse in the 1990s. Only one exception has ever been made since then, in 2016 for Patriot’s Day. All we are asking is for the acknowledgement of our Representatives in Congress–our most direct representation in the federal government,” explains Janet Demeter, the group’s founder, with Jack’s Angels foundation in Agua Dulce, CA. “We’re not asking them to change the rules, just to make an exception for these children in their most urgent need who have been neglected for decades, and who have so little time to find a cure. Until we can create more impactful legislation to fund research, H. Res. 114, our #Moonshot4Kids, could help speed financial support and scientific collaboration, accelerating effective therapies to save lives.”
The #Moonshot4Kids Rally for the Children is scheduled for the west lawn of the US Capitol on Tuesday, Nov. 17 at 12 noon, with a restricted total number of 50 to attend with masks and social distancing, and registration required to physically attend, with the event live-streamed on youtube and facebook for the public. The presentation will face eastward toward the Capitol Building, beneath the Speaker’s Office balcony, including pre-recorded video and live testimonials to the national, and international community’s support for children with brain cancer.
Co-founder Elizabeth Psar, CEO of the Julia Barbara Foundation in Knoxville, TN, explains, “DIPG is the 2nd most common brain tumor in children and is responsible for the majority of childhood deaths due to brain tumors. Most people do not think of brain cancer when they think of childhood cancer. It’s the most prevalent cancer in children and leads in childhood cancer deaths. We need this awareness resolution and awareness day, May 17, to alert and educate the public about it, our lawmakers, and clinicians. We’re discovering them too late, or at autopsy because we just don’t talk about it, and nobody knows. Awareness can help save lives today.”
In making their case, the legislative protocol originally referenced for the Patriot’s Day resolution is in effect today and viewable on Majority Leader Steny Hoyer’s website, stating, “A resolution of bereavement, or condemnation, which calls on others to take a particular action, is eligible to be scheduled for consideration.” Demeter explains, “all we’re asking for is this consideration; these kids die a horrific death of suffering that is not necessary; we have the technology today unlike 58 years ago when Neil Armstrong’s daughter died of DIPG. People just don’t know. We’ve been a voiceless community, with families too devastated to conceive of hopeful advocacy. We’re told our children’s lives don’t matter enough for research funding and to ‘go make memories’. We’re asking our Members of Congress for help, and are grateful for the enormous show of support from so many Representatives, and from the Senate. If only the House leadership would just allow a pathway for it to have a moment.”
In its language, the simple House resolution suggests that federal funding be increased for pediatric cancers in general, and that pediatric and high-mortality rate cancers be given greater consideration in the research grant process. For more information about this event, and registration, visit the events pages at dipgadvocacy.org on November 4, 2020 for updates.
Jack’s Angels Inc
32520 Wagon Wheel Rd
Agua Dulce, CA 91390