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Focusing on the Future

Together with our volunteers, donors, and partners this Childhood Cancer Awareness Month, NBTS is working to achieve breakthroughs and create change that will last a lifetime.

Improving Children’s Survival and Quality of Life

National Brain Tumor Society is committed to achieving breakthroughs in pediatric brain tumor treatment and quality of life.

  • In 2022, NBTS launched the DNA Damage Response Consortium in partnership with Yale Cancer Center. The consortium will bring together a diverse team of renowned adult and pediatric researchers to rapidly advance a new class of promising potential treatments that can target a brain tumor’s DNA damage response network. NBTS’s DDR Consortium will have the ability to incubate this emerging area of encouraging research and propel new treatments forward for multiple types of adult and pediatric glioma brain tumors, including glioblastoma, oligodendroglioma, astrocytoma, and ependymoma. 
  • NBTS advocacy helped secure much-needed funding increases for a number of important government agencies and programs in Congress’s FY 2022 omnibus appropriations bill, including:
    • $50 million in continued funding for the Childhood Cancer Data Initiative to connect and integrate multiple childhood cancer data sources
    • $30 million for the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act
    • $130 million for the Peer-Reviewed Cancer Research Program at the Department of Defense (DoD), where pediatric brain tumors and brain cancer will remain eligible topics for funding, a $15 million increase from FY 2021
    • $12.6 Million for the Gabriella Miller Kids First Research Act
    • A slight increase in funding for the U.S. Food and Drug Administration (FDA), including targeted increases to focus efforts on developing treatments for rare cancers, including pediatric brain tumors
  • NBTS advocacy also helped push the successful passage of the Gabriella Miller Kids First Research Act 2.0 in the U.S. House of Representatives, legislation that would increase funding for research for childhood cancers, including pediatric brain tumors.
  • NBTS’s Defeat Pediatric Brain Tumors Research Collaborative brought together leading childhood cancer experts from around the world that fostered team science and data-sharing. Together, the team:
    • Helped better understand the potential of non-invasive techniques to detect and monitor pediatric brain tumors
    • Developed new models in which to study pediatric brain tumors
    • Began testing potential new drug candidates in these new laboratory models of childhood brain cancer
  • With support from the CERN Foundation, a program of the National Brain Tumor Society, Dr. Sriram Venneti (University of Michigan) and his lab discovered in 2021 that the common diabetes drug metformin suppressed tumor growth in group A posterior fossa ependymoma laboratory models. 
  • In 2021, the NBTS Research Roundtable program hosted a meeting that brought together leading experts in pediatric brain tumor research with FDA, NIH, and biopharamas to innovate clinical trials and better utilize patient data.

NBTS connects the brain tumor community and provides resources to help better inform and prepare patients and their caregivers to access specialized treatment.

  • The NBTS Personalized Support and Navigation Program — a service provided by an experienced team, including a highly-skilled medical professional — ensures a patient and/or caregiver receives individualized attention, support, and information. This program has served numerous families facing a pediatric brain tumor diagnosis.
  • Similarly, NBTS offers a host of initiatives, such as Meditation Mondays, that help families impacted by a pediatric brain tumor diagnosis cope with stress and grief.
  • As part of our Informed in 30 video series, NBTS teamed up with childhood cancer experts Drs. Joanne Porter of Journeys Pediatric Palliative Care and Lauren Weintraub of the Pediatric Neurooncology Program at Albany Medical Center for an educational session on innovations in pediatric brain tumor research and development.
  • Staff from NBTS serve as representatives from the pediatric brain tumor community on two leading childhood cancer advocacy coalitions, the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer (CAC2). NBTS co-chairs the Alliance’s Policy Committee.

NBTS and its volunteer advocates helped influence the federal government to:

  • Provide $130 million for the Peer-Reviewed Cancer Research Program of the Department of Defense for FY22, a $15 million increase over FY21, and ensured brain cancer, pediatric brain tumors, and pediatric, adolescent, and young adult cancers were once again included as eligible priority research topics for funding.
  • Allocate $30 million to fully fund the Childhood Cancer STAR Act for a fourth consecutive year.
  • Secure $50 million to fully fund the Childhood Cancer Data Initiative (CCDI) for a third consecutive year.
  • Secure $45 billion in funding for the National Institutes of Health (NIH) for FY22, a $2.25 billion increase over FY21, and $6.9 billion to the National Cancer Institute (NCI), a $353 million increase.

In addition, in partnership with our advocates, NBTS:

  • Took part in the effort to reignite the Cancer Moonshot, which renewed the Biden administration’s commitment to ensuring progress against cancers, including pediatric brain tumors, remains a national priority.
  • Supported the Childhood Cancer STAR Reauthorization Act. The original STAR Act was the most comprehensive childhood cancer bill in history. It expanded opportunities for childhood cancer research, improved efforts to identify and track childhood cancer incidences, and invested in enhancing quality of life for childhood cancer survivors. This new bill will allow those programs to continue for the next five years.
  • Continued support for the Gabriella Miller Kids First Research Act 2.0, which provides funding for a pediatric disease research initiative within the NIH.
  • Advocated with other groups for a resolution designating an official DIPG Awareness Day in the United States.

NBTS also ensures the pediatric brain tumor voice is represented at the highest levels and most critical junctures of our nation’s biomedical research funding system:

  • NBTS’s CEO sits on the Childhood Cancer Data Initiative’s Steering Committee.
  • NBTS’s Chief of Community & Government Relations sits on the Center for Disease Control Childhood Cancer STAR Act advisory group.
  • NBTS’s Chief of Community & Government Relations is a member of the NCI’s Pediatric and Adolescent Solid Tumor Steering Committee.
  • NBTS has for years, and continues to, nominate pediatric brain tumor research advocates to serve on review committees for grants from the Peer Reviewed Cancer Research Program of the Department of Defense.

NBTS also continues to spearhead advocacy efforts to ensure that pediatric brain tumor research projects are eligible to receive funding from the Peer Reviewed 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.

Childhood Cancer STAR Act

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.

Members of the Senate and House introduced a bipartisan bill to reauthorize the STAR Act beyond its set expiration in 2023 and extend these important programs. This Childhood Cancer Awareness Month, help urge your local representatives to support this key piece of legislation through our action alert.

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