After accidents and injuries, cancer is the leading cause of death in children in the US. CNS(Central Nervous System) tumors are actually the leading disease-related cause of death in children in the United States.
DIPG accounts for the majority of pediatric brain tumor deaths annually, and is the 2nd most common brain tumor in pediatric incidence. DIPG is the most devastating of pediatric malignancies; almost all children with this disease die within 2 years of diagnosis. Median survival time post-diagnosis is 9 months; without treatment, they have weeks, or days.
No parent should ever hear that there are no solutions for their child because his or her life is insignificant to research investors, yet this is a common experience today. We remain committed in our advocacy for children with DIPG and all childhood cancers to raising awareness to the inadequacies of a medical research investment culture that systematically ignores those lives most needy of a cure.
Why is DIPG Awareness Important?
DIPG in all of its horror presents a unique opportunity to alert and to educate the public about the realities of childhood cancer, and deadly disease. Because all childhood cancers are considered rare, despite our best of intentions these are literally neglected diseases for research investment into effective treatments. Research investment follows the goals of industry, which is profit and serving the masses. Children who are fighting for their lives, and their families, are for all practical purposes a voiceless and unseen population. H. Res. 404 calls out DIPG, a prolific yet largely unknown killer, to draw attention to the unmet needs of children with cancer–as most childhood cancers have small patient populations and have no effective therapies, as such. We advocate for all legislation which supports pediatric research and the unmet medical needs of children. No matter how deadly the disease, or how great the suffering, the unseen and the voiceless are consistently overlooked.
How can I learn more about the group?
DIPG Advocacy Group began on Facebook and you can join this group at www.facebook.com/groups/HRes114, and the page Moonshot4Kids. You may be in contact with us directly on the links below, or write to [email protected] or [email protected]. You may contact Janet our Group Organizer by phone or text at 818-400-2724.