Posted by PNOC Foundation, March 5, 2020 Newsletter PNOC’s Project Leader Dr. Sabine Mueller and PNOC Scientific Chair Dr. Adam Resnick were members of the expert panel for the DIPG, Pediatric Brain Cancer, and the Importance of H. Res. 114. Congressional Briefing in Washington DC on February 13th. “Amongst pediatric brain tumors, diffuse midline gliomas – including diffuse intrinsic pontine …
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UPDATE ON THE IMPACT OF COVID-19 AND NBTS EVENTS & ACTIVITIES
Dear Brain Tumor Community, Due to ongoing concerns related to the outbreak of the novel coronavirus (COVID-19), the U.S. Centers of Disease Control and Prevention (CDC) has issued updated guidance for community and mass gatherings and is now asking that any event of more than 50 people that is scheduled for the next eight weeks be postponed, canceled, or moved to a …
To Congress, from Colleagues, Experts, Philanthropists, Parents, Patients
from Congressional Briefing 2/13/2020, 11am, 2168 Rayburn H.O.B. DIPG, Pediatric Brain Cancer, and the Importance of H. Res. 114 Congresswoman Jackie Speier (D-CA-14) “DIPG is a death sentence for children today, but it doesn’t have to be; this resolution is an important first step in securing the resources needed to develop better treatment options and find a cure.”* Dr. Sabine …
To the Childhood Cancer Community
Feb. 29, 2020 To the Childhood Cancer Community: We would like to share with you an historic event for DIPG, pediatric brain cancer, and childhood cancer in general which took place just 2 weeks ago on Feb. 13, 2020 in Washington DC. Despite advances in leukemia and progress with childhood cancer survival rates in recent years, most exclusively pediatric cancers …
#CongressionalBriefing #DIPGwontWait #Moonshot4Kids #NoTimeToLose #DefeatDIPG
Jace Ward is a pre-law student, 20 years old, who was diagnosed in May of 2019 with DIPG, diffuse intrinsic pontine glioma, notorious in the oncology community for its dismal <1% survival rate. He will be among our panelists in the upcoming briefing scheduled for February 13, 2020. Because most diagnosed are young children between 5-9 years of age, and …
Resolution Information
What is the meaning of H. Res. 114; what does it really do? H. Res. 114 raises awareness to the lack of adequate research funding into cures for pediatric cancer, and the statistics around pediatric brain cancer, CNS tumors being responsible for more childhood deaths than any other disease in the US. H. Res. 114 suggests that the years of …
No Time to Lose: Advocacy Group Makes Congressional Hearing Request for Jace Ward, Diagnosed with the Deadliest Pediatric Cancer.
Thursday, Dec. 12, 2019, Santa Clarita, CA–Today a 2nd Hearing Request Letter was sent by the DIPG Advocacy Group to the Energy and Commerce Committee in US Congress for Jace Ward, a 20 year-old pre-law student from Wamego KS, diagnosed on May 17 of 2019 with DIPG, notorious for its less than 1% long-term survival rate. Ironically, this is the …
As Use of Genomic Data Expands in Cancer Care, Patients Share Their Stories
As originally published by the National Cancer Institute December 3, 2019, by NCI Staff Last spring, at the end of his sophomore year of college, Jace Ward developed double vision in his left eye. He thought the problem might have been related to a recent car accident. But when doctors investigated, they found a tumor in his brain. After the …
What is an H. Res. bill?
Simple House Resolutions (designated H. Res. __) only need a vote in the House of Representatives to pass; they do not allocate funds or need a signature from the President as they are not laws, per se, and they are non-political. They are also referred to as a “Sense Of” Resolution as they embody a common feeling or sense of …
Cures 2.0 Call to Action
Five years ago, we initiated a “Call to Action”, that included a nationwide request of patients and their families to join us in an effort called “21st Century Cures”. Our combined efforts led to the enactment of the 21st Century Cures Act in 2016. Today, the 21st Century Cures Act is helping to advance medical research and foster a new …