Create Change to Last a Lifetime

According to the Central Brain Tumor Registry of the United States, childhood brain and CNS cancer, while rare, is the leading cause of cancer-related death in children, as well as the most commonly diagnosed cancer in children 14-years-old and younger. Learn more about pediatric brain tumors below, including how the National Brain Tumor Society seeks to change that reality and is working to find better treatments and a cure.

About Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month (CCAM) in the United States. It is a time to recognize, advocate for, and honor children that have been affected by cancer and the families that care for them, while highlighting the critical need to support research that can lead to safer and more effective treatments for our most vulnerable patients.

As brain tumors are the leading cause of cancer-related death in children, as well as the most commonly diagnosed cancer in children 14-years-old and younger, the brain tumor community has an enormous stake and voice in Childhood Cancer Awareness Month.

During Childhood Cancer Awareness Month 2020, the National Brain Tumor Society seeks to bring the realities of this devastating diagnosis for children and families to the forefront, while sharing important progress being made in the field, raising resources to support ongoing and future research efforts, and providing opportunities for families to engage, together, to help create change to last a lifetime.

Pediatric Brain Tumor Facts & Figures

  • Brain tumors are the leading cause of cancer-related death in children and young adults ages 19 and younger in the United States.
  • Pediatric brain tumors are the most commonly diagnosed cancer in children age 14 and younger.
  • An estimated 3,540 new cases of childhood primary malignant and non-malignant brain and other CNS tumors will be diagnosed in the United States in 2020.
  • It is estimated that more than 13,000 children are living with primary malignant brain or other CNS tumors.
  • There has never been a treatment developed and approved specifically for pediatric brain tumors.
  • For many pediatric brain tumor types, a standard of care is not well-defined.
  • Survival following diagnosis with a malignant brain or other CNS tumor is 74.7% for ages 14 and younger. For pediatric high-grade gliomas, survival rates are devastatingly, unacceptably low.
  • Survivorship can come at a great cost. Survivors of pediatric brain tumors often experience lifelong challenges resulting from the effects of the tumor itself and harsh treatments on their developing brain.
  • Among children age 19 and younger, brain and other CNS tumors represent the largest cause of years of potential life lost (YPLL) due to cancer, with a mean YPLL of approximately 80 years.

Defeat Pediatric Brain Tumors

Defeat Pediatric Brain Tumors (DPBT) is a powerful, unique, global research and drug discovery program which aims to improve clinical outcomes for pediatric brain tumor patients and enable the development of the first-ever standard of care for treating pediatric high-grade gliomas (pHGG) – the most lethal of pediatric cancers.

Critical findings in recent years – including many funded by the National Brain Tumor Society – have positioned the field of pediatric brain tumors to enter a new era in treatment and survival. NBTS has built a track-record of success, playing a critical role in funding many of the field’s crucial findings that have brought us to the threshold of a new era. From that strong foundation, we have launched the Defeat Pediatric Brain Tumors Research Collaborative program, bringing together some of the world’s best pediatric brain tumor research teams from St. Jude Children’s Research Hospital, Montreal Children’s Hospital/McGill University Health Centre, and the German Cancer Research Center. Learn more about the program and its key findings.

Childhood Cancer STAR Act & The PRCRP

In 2018, National Brain Tumor Society had the privilege and opportunity to directly contribute to the formation of the bill and, as a member and co-chair of the policy committee of the Alliance for Childhood Cancer, to help champion its passage.

The Childhood Cancer STAR Act is the most comprehensive childhood cancer legislation taken up by Congress in decades. This bipartisan bill is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance, as well as providing enhanced resources for survivors and those impacted by kids’ cancers.

We now continue to work with Congress and the government agencies necessary to deliver on the bill’s promise for children with brain tumors. By urging lawmakers to continue to carve out funding for the bill’s programs during the annual appropriations process for the federal government and by working closely with the U.S. Department of Health and Human Services (HHS), the National Cancer Institute (NCI), and the Centers for Disease Control and Prevention (CDC), NBTS works to ensure the unique needs of the pediatric brain tumor community are heard as this bill is implemented.

You can help this effort by taking action and contacting your members of Congress today.

Also, be sure to check-out the blog commemorating the second anniversary of the STAR Act becoming a law, written by NBTS’s Chief of Community & Government Relations, Danielle Leach.

NBTS also continues to spearhead advocacy efforts to ensure that pediatric brain tumor research projects are eligible to receive funding from the Peer Review Cancer Research Program (PRCRP), a part of the Department of Defense’s Congressionally Directed Medical Research Programs. Since it was started, the PRCRP has funded important research in a variety of pediatric brain tumor types including medulloblastoma, glioblastoma, DIPG, ependymoma, and more. We also work closely with the DOD to ensure our pediatric brain tumor researchers learn about the application process and nominate patient advocate reviewers for the annual proposal review process. You can help ensure this transformative source of funding for childhood brain tumor research remains available by taking this action alert on PRCRP funding.

Focusing on the Future

At the end of 2018, NBTS joined with a group of advocacy partners to secure $2 million in supplemental funding from the National Cancer Institute for Project HOPE (High-Grade Glioma-Omics in Pediatric and AYA). This project will also use single-cell sequencing approaches designed to capture critical information on tumor cell types and the tumor microenvironment that are missed by traditional sequencing techniques. As this work begins, we are hopeful that this information will generate new discoveries about tumor growth and progression and will ultimately inform the development of more effective treatments for pediatric and young adult patients.

If you’re interested in learning more from experts in the pediatric brain tumor field, please consider joining us for the following webinar this month.

What is Project HOPE – A CCAM Webinar

Project HOPE (High-Grade Glioma-Omics in Pediatric and AYA), is a transformative research project optimizing single-cell sequencing to learn more about tumor growth and progression.

In this webinar, Dr. Mariella Filbin, Co-Director, Pediatric Neuro-Oncology Program, ​Dana-Farber Boston Children’s Cancer and Blood Disorder Center; Dr. W.K. Alfred Yung, Professor, Department of Neuro-Oncology, UT MD Anderson Cancer Center; and David Arons, CEO of NBTS share key details about this initiative and how it impacts the brain tumor community.

cIMPACT-NOW Webinar

Join Dr. David Ellison, Chair Department Pathology at St. Jude Children’s Research Hospital, Dr. Mark Gilbert, Chief Neuro Oncology Branch at the NIH, and Kim Wallgren, CERN Foundation, as they discuss the cIMPACT-Now update 7 publication. This webinar will educate patients and care partners on how molecular classification is done and why it is important to the community, along with sharing the most recent ependymoma updates. If you would like to pre-register for the virtual event and receive emails regarding the event, email us at administrator@cern-foundation.org.

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