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 gliomas that we often refer to as DIPG – are one of the deadliest tumors of childhood and there are virtually no long term survivors. The median survival for these tumors to date remains 6-12 months. Less than a school year these families have with their children… But I remain optimistic that with increasing awareness, the right financial support and true collaboration among stakeholders including families, advocacy groups, regulatory agencies and the medical community we will be able to change the outcomes for these tumors.” — Dr. Sabine Mueller
The briefing aimed to gather support for H. Res. 114 an awareness resolution for DIPG that also encourages public and private sources of cancer funding to elevate their consideration of the mortality rate, as well as the life-years lost, as significant factors to be considered in funding processes. DIPG Advocacy Group who organized the congressional briefing, are calling for the pediatric brain cancer community to help gather support for this important awareness resolution for DIPG and pediatric cancer.
How you can help:
Step 2. Check here to see if your representative has already cosponsored H.Res. 114 (You can click on your state in the left side column).
Step 3. If your rep is not yet listed as a cosponsor ask them to support and cosponsor H. Res 114. We recommend writing via email, mail and phoning them.
|Thank you for being part of this amazing community. With your support, PNOC doctors and researchers are working towards a future where we lose no child to brain cancer.
The PNOC Foundation Team