Today’s radio broadcast is a special presentation and sneak peek of part II of a Tribute Video, not yet seen, to DIPG children and their parents who have each contributed to the National DIPG Awareness Resolution in US Congress today through inspiration and advocacy for children with brain cancer. The Resolution is the unique contribution of the DIPG community to spearheading The Childhood Cancer Awareness Movement, a long-standing fight to raise awareness to the urgent need for increased support for research into cures for our children. DIPG in all of its horror as the leading cause of deaths in children due to brain tumors, and brain tumors being the #1 killer of children with cancer, with no progress in standard treatment nor prognosis in over ½ a century, exemplifies in a powerful way the neglect of childhood cancer research by the private sector and the federal government today relative to the urgent need for solutions.
Because most all of our children die from DIPG, and the surviving family members usually too distraught and marginalized to even conceive of hopeful advocacy, the intense suffering and grief has remained out of sight and out of mind of mainstream consciousness for decades. The more prevalent experience of lack of solutions, poorly tolerated treatments, and long-term survivor physical challenges directly related to these treatments is diminished by commercials asserting that 80% of children survive cancer. The modest allocations in childhood cancer legislation continue to be a fight for childhood cancer advocates to ensure, not to mention reauthorizations and new introductions. There is still insufficient awareness in Congress and in our society to the urgent, unmet needs of most children with cancer, and certainly brain cancer, a prevalent form of pediatric cancer and the deadliest.
Today’s show features 3 children and their families who in their own unique way helped inspire the DIPG Awareness Resolution in US Congress today. We begin with Wendy Fachon of East Greenwich Rhode Island, and her son Neil; Wendy is an environmental science educator and advocate for children on many fronts. Next, Elizabeth Psar, an attorney ad Litem for children in Knoxville TN with the Julia Barbara Foundation and cofounder of DIPG Advocacy Group, shares about her daughter Julia and the pathway she has helped forge to raise national awareness for DIPG. Finally, Brian and Tamara Ekis from the Pittsburgh area in North Huntingdon PA share about their daughter Grace and Reflections of Grace Foundation, an organization which has been helping children with DIPG and their families, and raising funds for research, since 2009.