DIPG Advocacy Group Announces Congressional Briefing for Pediatric Brain Cancer

Dr. Monje pediatric brain cancer expert

Dr. Michelle Monje, conferring expert, DIPG Awareness Resolution

author of DIPG Awareness Resolution

Congresswoman Jackie Speier (D-CA-14)

Jace Ward, Wamego, KS

Jace Ward, Wamego KS

Congressional Briefing scheduled for H. Res. 114, supporting national awareness to the devastation of pediatric brain cancer and the urgent need for solutions.

DIPG is a death sentence for children today, but it doesn’t have to be.”
— Congresswoman Jackie Speier (D-CA-14)

SANTA CLARITA, CA, USA, January 6, 2020 /EINPresswire.com/ -- DIPG Advocacy Group, an unincorporated association of pediatric brain cancer organizations and childhood cancer advocates formed in support of H. Res. 114, the DIPG Awareness Resolution, today gives preliminary notice of a Congressional Briefing in the Gold Room of the Rayburn House Office Building in Washington D.C. on February 13, 2020. Group admins Paul Miller, of Littleton CO, Elizabeth Psar of Knoxville TN, Lisa Ward of Wamego KS, and group organizer Janet Demeter of Agua Dulce, CA, are hopeful for the briefing to bear an impactful and direct message to lawmakers regarding DIPG, pediatric brain cancer, and the state of research for deadly childhood cancers.

On Feb. 8, 2019, Reps. Jackie Speier (D-CA-14) and David P. Joyce (R-OH-14), along with 16 of their colleagues, introduced a bipartisan resolution to raise awareness of and advocate for increased research funding for diffuse intrinsic pontine glioma (DIPG) – a highly aggressive and difficult to treat pediatric cancer brain tumor. H. Res. 114 would recognize May 17t​h​ as National DIPG Awareness Day and call for expanded research for treatments and care for children with this deadly disease. “DIPG is a death sentence for children today, but it doesn’t have to be. By investing in research and raising awareness we have the power to thwart this terminal scourge,” Rep. Speier said.

According to Dr. Michelle Monje, conferring expert on the Resolution, pediatric neuro-oncologist and research leader at Stanford University, pediatric brain cancer is the leading cause of disease-related death in children in the United States. Despite being responsible for the most pediatric brain tumor deaths each year, DIPG has not garnered significant attention from the media, researchers, or the government. As a result, parents are regularly told there is little that can be done for their children. Monje is among 6 other world renown experts in the field who have signed a joint statement of experts in support of H. Res. 114.

The briefing panel will include David Arons, CEO of the National Brain Tumor Society, Sabine Mueller, Director, Centre of Excellence for DIPG at University Children’s Hospital Zurich, Switzerland and Adjunct Associate Professor, University of California San Francisco, PNOC leading scientist, and also notably Jace Ward, a 20-year old pre-law student from Wamego KS in active treatment for DIPG, among others. “Most children diagnosed with DIPG are very young and do not live long past diagnosis, so this opportunity to have Jace speak to the DIPG experience is truly a blessing. We are all in awe of his bravery and resolve to speak out on behalf of so many children who will never have a voice, and so many yet to be diagnosed,” notes Demeter, the group organizer. The fully confirmed panel and reception details are expected to be announced January 13, 2020.

Janet Demeter
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