National Brain Tumor Society


55 Chapel Street, Suite 200,
Newton, MA 02458
617-924-9997
https://registry.fastercures.org/organization-profiles/1005.html?user=10220


   

TRAIN Inventory Profile

Mission
Strategy/Approach
Research Portfolio
Financials
Key Accomplishments
Leadership
Ask Us About
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Mission

National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and anyone who will be diagnosed tomorrow. This means effecting change in the system at all levels.

Our task is daunting. Brain cancer is a devastating disease with one of the worst survival rates and highest costs of treatment. Brain tumors are now the leading cause of cancer-related death in children under 14. There are over 120 different kinds of brain tumors and their location makes them difficult and dangerous to treat.

But we know from our work, driving systemic change is critical to moving forward. It takes a deep understanding of all the challenges and opportunities in the drug development landscape and robust collaboration with many different groups. As the largest brain tumor organization in the U.S., we are leading the effort in new, innovative ways to respond to the community’s urgent need for progress.

Strategy/Approach

We are driven to do everything in our power to get to new treatments and better quality of life for brain tumor patients. Our core integrated programs in Research and Public Policy & Advocacy both leverage thoughtful Industry, non-profit, and government (FDA, NCI, NIH) partnerships and engagement with a strong commitment to patient education and empowerment.

We know that alone as an organization we are not big enough to do or fund everything that can be done, so we identify the critical gaps and needs, identify partners, and act as a catalyst to change the system. We have worked tirelessly to define new ways of doing business in the field of brain tumor research. One example is in our Defeat GBM Research Collaborative initiative, where we have built a thriving, cross-institutional approach to collaborative science, integrated a ‘black box’ of compounds from industry, leveraged an innovative business model to increase investment, and building new adaptive clinical trials. We also work closely with policymakers as the only brain tumor non-profit with a public policy team to advocate for funding and resources for adult and pediatric brain tumor patients.

Research Portfolio

Currently our key areas of focus are:

Defeat GBM Research Collaborative – Fiver year, multi-million dollar initiative with four cores focused on Discovery, Drug Development, Biomarkers, and adaptive clinical trials. Research partners include MD Anderson, Ludwig Cancer Research, UCSD, UCLA, Memorial Sloan Kettering, and biopharmaceutical companies.

Oligodendroglioma Research Fund -- In partnership with the brain tumor community, this fund has raise over $1m for oligo research. Three innovation grants for $300,000 each have been award so far, capitalizing on recent genetic discoveries from previously funded NBTS research surrounding oligo, including the association of chromosomal arms 1p/19q deletion and patient prognosis; IDH1’s role in glioma development; and the finding that oligos originate from progenitor cells.

Pediatric Initiatives –Through just completed developmental neurobiology grants, co-funded in partnership with the Brain Tumor Foundation of Canada, and the launch of Project Impact: Defeat Pediatric High Grade Glioma Research Collaborative, structured off the Defeat GBM model for collaborative science and industry partnership, NBTS is tackling the barriers slowing the investment and development of brain tumor treatments for pediatric patients that are both safe and effective.

Clinical Trial Endpoints -- Working with stakeholders in the drug discovery and development process for FDA, industry, and a coalition of non profits, NBTS is leading imaging and COA work to improve brain tumor clinical trial endpoints. Recently the team announced new consensus recommendations for a standardized “Brain Tumor Imaging Protocol (BTIP)” which has already begun to be adopted in clinical trials.

Financials

Fiscal year 2014, ending 12/31/14

  • Revenue: $9,387,870
  • Assets: $4,293,080
  • Grants: $2,451,549
  • Gifts Received: $9,387,870
  • Total Expenditures: $10,997,198

Key Accomplishments

  • Since the founding of our legacy organizations we have provided approx. $34 million in research grants over several decades, first helping to build the field and now driving the discovery of new treatments through systemic change.
  • Funded work in the molecular profiling of pediatric brain tumors, allowing future researchers to better understand the underlying biology that is driving these cancers.
  • Launch Project Impact: Defeat Pediatric High Grade Glioma Research Collaborative, a major new effort to battle potentially difficult pediatric brain tumors and address the most critical barriers hindering drug development. 
  • Champion pediatric brain tumor legislation in the United States Congress that is providing more funding for pediatric research and drug development.
  • Helped increase proposed policies that expand on targeted, precision medicines for patients as well as accelerate drug development and approvals through the 21st Century Cures Act.
  • Urged Congress to pass the STAR Act, which was crafted with help by NBTS and members of congress, in the house and Senate. 
  • Recently announced new, consensus recommendations for a standardized “Brain Tumor Imaging Protocol (BTIP)”, to improve the accuracy of imaging data in brain tumor clinical trials and help to better assess if a new treatment is effective as part of our Clinical Trial Endpoints Initiative
  • Funded pre-clinical trials that led Duke University researchers to discover that brain tumor patients treated with a tetanus booster prior to experimental immunotherapy vs. immunotherapy alone may live longer than control group with no signs of tumor re-growth
  • Funded research through the Defeat GBM Research Collaborative that has already yielded nine publications in a year and a half.
  • Defeat GBM Discovery team found that by therapeutically restoring the function of a protein called BIM, drugs could potentially block GBM cells’ resistance to certain, initially promising treatments and thereby slow or stop tumor growth.

Leadership

National Brain Tumor Society is governed by a board of directors. Programs and initiatives of the organization are informed by the strategic input of advisors as part of: Strategic Scientific Advisory Council, Scientific Advisory Council, Industry Advisory Board, Medical Advisory Board, Public Policy Advisory Committee, and Scientific Policy Committee. Members of each can be found here

Staff

Ask Us About

  • Building research collaborations
  • Interaction with regulatory agencies
  • Partnering with industry