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2022 Impact Report

National Brain Tumor Society (NBTS) has made significant progress over the past year through three interconnected, programmatic strategies: Defeat, Connect, and Change.

  • Defeat: NBTS drives and influences best-in-class medical research to develop and deliver longer survival, better quality of life, and ultimately cures through new innovative treatments for patients with a brain tumor as quickly as possible.
  • Connect: NBTS convenes, educates, and unites the brain tumor community.
  • Change: NBTS fuels the voice and power of the brain tumor community to advocate, elevate our mission, and influence public policy. 

The generous support of donors, volunteers, advocates, and partners drives this important work and accelerates breakthroughs in brain tumor research. With your support, NBTS has helped leverage $48 million in new brain tumor research funding through grants and the National Institutes of Health (NIH) this year. 

Because of NBTS funding, hundreds of patients with a brain tumor were offered new treatment opportunities through four new and expanded clinical trials in 2022. NBTS funding also catalyzed evaluations into three new types of promising treatments outside of standard chemotherapy and radiation. Your continued support has NBTS poised to advance this research toward new treatments and cures to make this decade one of unprecedented progress.

Advancing Brain Tumor Research

NBTS launched the DNA Damage Response Consortium, in partnership with Yale Cancer Center, in early 2022. The consortium brings together a diverse team of renowned adult and pediatric researchers, from nine major cancer centers, to rapidly advance a new class of promising potential treatments that can slow and stop a crucial mechanism of how brain tumors grow. The consortium will test different drugs and drug-device combinations in the laboratory, share data, and then bring the most promising investigational treatments forward to evaluate in clinical trials that match the right treatments with the right patients. The first clinical trial is opening by the end of 2022.

The NBTS-supported GBM AGILE clinical trial is now open at 49 sites across four countries.

The NBTS-supported Project ALLELE, launched by Accelerate Brain Cancer Cure, helped more than 380 newly diagnosed GBM patients access advanced biomarker testing results for their diagnosis, care, and participation in clinical trials. The ALLELE consortium has also identified a protein called CD73 as a new drug target for a subset of patients with GBM, for which clinical trials are now actively being planned. Finally, tissue from the consortium has helped create 21 new disease models that could be used to inform patient treatment decisions.

Discoveries from the 2020 CERN Robert Connor Dawes Pediatric Fellowship, supported by the National Brain Tumor Society, to Dr. Chan Chung in Dr. Sriram Venneti’s laboratory at the University of Michigan were instrumental in helping to win an esteemed $3 million R01 grant from the National Cancer Institute (NCI). The grant aims to address significant gaps in our understanding of posterior fossa ependymomas — a highly medically underserved pediatric patient population — and lay the groundwork for developing effective treatments.

Seeding Innovation

NBTS’s Brain Tumor Investment Fund helped propel forward into a clinical trial a potential first and best-in-class treatment approach, sonodynamic therapy, sponsored by Alpheus Medical. This innovative non-invasive approach to treatment for glioblastoma was granted both FDA Orphan Drug and Fast Track Designations to speed the regulatory review. 

NBTS funding helped catalyze the development of a new treatment that targets GBM tumors with alterations to a gene known as EGFR, which occur in approximately 50% of patients. While other EGFR-targeting treatments have been tried for GBM patients, none have successfully blocked it to improve patient survival – likely because they didn’t address the unique biology of brain tumors. The new treatment, developed at UCLA with funding from the Sharpe-NBTS Brain Cancer Research Awards, was created to attack the specific type of EGFR alterations found in GBM cells and get past the brain’s defense mechanisms. This potential new drug has just moved into a clinical trial for patients.

NBTS-funded research discovered that most glioblastoma tumors contain pieces of “extrachromosomal DNA” or “ecDNA” that appear to help cancer hide and also grow and resist treatments. This discovery was made as part of the NBTS Defeat GBM Research Collaborative by Drs. Paul Mischel and Roel Verhaak and has resulted in an international consortium of leading researchers called eDYnamIc, with NBTS serving as an official patient advocacy partner. eDYnamIc received a major “Cancer Grand Challenge” grant for $25 million to better understand ecDNA and ultimately develop early detection and future treatment approaches.  

Influencing Public Policy

Due to NBTS’s advocacy efforts in collaboration  with the brain tumor community, NIH funding for brain tumor research increased by $20 million to $435 million.

For the fourth consecutive year, Congress took swift, bipartisan action to recognize Brain Tumor Awareness Month in May. This year’s resolution for Glioblastoma Awareness Day in July passed earlier than ever, tripling the number of co-sponsors in the House to 13 representatives. The resolution included stronger language in support of the Glioblastoma Therapeutics Network — a key research program at the NIH. 

Thanks to NBTS volunteer advocates, important legislation that would eliminate unreasonable waiting periods from time of diagnosis to get Social Security and Medicare benefits was advanced in Congress. The 2022 Head to the Hill event, mobilizing advocates from 47 states, secured 23 new co-sponsors in the House and one new co-sponsor in the Senate for the Stop the Wait Act.

Community here. Breakthroughs ahead.

Over the last decade, our understanding of brain tumors advanced in ways we never thought possible. By forging opportunities to transform brain tumor research and health care for the future, we are tackling roadblocks to find a cure. Together, we will be the community that can make this decade one of unprecedented progress. 

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