National Brain Tumor Society, Inc.

Community here. Breakthroughs ahead.

aka NBTS   |   Newton, MA   |  http://www.braintumor.org

Mission

National Brain Tumor Society unrelentingly invests in, mobilizes, and unites our community to discover a cure, deliver effective treatments, and advocate for patients and their care partners.

Ruling year info

1994

Chief Executive Officer

Mr. David Arons, JD

Main address

55 Chapel Street Suite 006

Newton, MA 02458 USA

Show more contact info

Formerly known as

Brain Tumor Society

EIN

04-3068130

NTEE code info

Brain Disorders (G48)

Cancer (G30)

Cancer Research (H30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Brain tumors affect people of any race, gender, or age. Approximately 700,000 Americans are living with a primary brain tumor. More so than any other cancer, brain tumors can have life-altering psychological, cognitive, behavioral, and physical effects.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research

We drive and influence best-in-class medical research to develop and deliver new innovative treatments and potential cures to brain tumor patients as quickly as possible.

Patients and caregivers are our priority. We focus on groundbreaking research initiatives with the potential to translate promising science from the lab into treatments that improve survival and quality of life. We’re accelerating breakthroughs that will have a profound impact on the brain tumor community. Our research initiatives advance treatments for patients of all ages across brain tumor types so that no one is left behind. We incentivize and facilitate collaboration between pharmaceutical companies, investors, and world-class translational scientists to get the results patients need.

We also bring stakeholders together including the Food and Drug Administration (FDA), National Institutes of Health (NIH), biopharmas both large and small, oncology and neuroscience researchers, medical providers, and patients and caregivers to foster discussion and take unified action.

Population(s) Served

We equip patients and caregivers with the tools and resources to navigate every step of their unique health care journey - from understanding their diagnosis and building their medical team to making decisions about treatment, including accessing clinical trial opportunities and palliative care.

We organize events that bring the brain tumor community together to honor, learn, develop meaningful relationships, turn grief into action, and fuel momentum for our cause.

Population(s) Served

We fuel the voice and power of the brain tumor community to advocate and influence public policy. We ensure the brain tumor community’s needs are reflected in national medical research and healthcare policy decision making.

Together, we advocate for the federal government to make strategic investments in brain tumor research, improve health care delivery, reduce health disparities, and raise the priority level for our community’s urgent needs.

Over 35,000 volunteer advocates across all fifty states affect change at the local, state, and national levels annually. We coach and educate our community on policy issues so they can urge government officials to create policies that support our vision of conquering and curing brain tumors - once and for all.

Through our advocacy initiatives, we affect the lives of hundreds of thousands of Americans living with a brain tumor today, and those who will be diagnosed in the future.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of volunteers

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

In 2020 and 2021 NBTS hosted fewer events held virtually for the safety of our community

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Conquering and curing brain tumors — once and for all.

Building on over 30 years of experience, the National Brain Tumor Society (NBTS) unrelentingly invests in, mobilizes, and unites the brain tumor community to discover a cure, deliver effective treatments, and advocate for patients and caregivers. Our organizational strategies are to use medical research funding, convening, thought leadership, and advocacy as means of enabling new treatments to be developed. In addition, our community-focused strategy aims to prepare brain tumor patients from the time of diagnosis through their health care journey while ensuring vital connections to peers and experts and to empower patients, caregivers, and researchers to be influential in public policy making. Our organizational strength strategy aims to increase NBTS’ effectiveness and value to the brain tumor community so that we can be a vehicle and platform for reaching our mission.

We break down barriers today and forge opportunities to transform brain tumor research and health care for the future. We bring together staff and volunteers with deep expertise in the scientific and health care areas that we work in, and we are empowered by the thousands of dedicated volunteers, donors, and partners we work with nationwide. Through community-based relationships and scientific, policy, and healthcare expertise, we are powering a new era of progress.

Over the last decade, our understanding of brain tumors advanced in ways we never thought possible. Now, we are poised to leverage these insights into new treatments and cures. As an example, In the past five years, NBTS has been a catalyst for change in clinical trials. As a result of those efforts, we are now seeing new clinical trials designed to evaluate more promising drugs. As a result of NBTS advocacy over the past five years, there has been an increase in federal investment in brain tumor research.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.

  • Who are the people you serve with your mission?

    National Brain Tumor Society serves the entire brain tumor community, with a core value of putting patients first. Our mission spans all types of brain tumors across all age groups. In addition, we work with a diverse group of stakeholders from government, media, corporations, and individuals to bring about collective concern and action to unite and mobilize to reach our mission.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    In response to the COVID-19 pandemic, community feedback directly impacted how we planned in-person events once it became safe to gather in person again in accordance with guidelines from the CDC and local government. Community feedback informed our organizational event health and safety protocol to ensure our most vulnerable attendees were prioritized and could feel safe and comfortable should they choose to attend an in-person event. We continued to provide virtual participation and programming options for accessibility.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    NBTS takes a multi-pronged community-based approach to advancing our mission, which requires open and honest conversation and relationship building within our community to achieve our shared goals. We know it takes the combined knowledge, expertise, and dedication of many individuals and organizations to fight brain tumors and develop new treatments. Asking for and acting on feedback from our community stakeholders across the brain tumor space is essential to help discover better treatments, faster, while promoting information sharing and collaboration among experts around around the world. Ensuring that all voices are respected and valued is critical to effectively uniting our community, advocating for change, removing barriers to healthcare access, and supporting innovation in research.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

National Brain Tumor Society, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

National Brain Tumor Society, Inc.

Board of directors
as of 10/07/2022
SOURCE: Self-reported by organization
Board chair

Thomas Roloff

Thomas Roloff

Robert Burger

Dave Brown

Robert Corrao

David Donabedian

Evanthia Galanis, MD

Ryan Lang

Edjah Nduom, MD

Eric Olson, PhD

Liz Salmi

Salo Zelermyer, JD

Erica Birke

Joohee Sul

Corie Yutkin

Allison Bishof

Adam Hayden

Mil Parekh

Leah Recht, JD

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 4/19/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Gender identity
Male

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 10/07/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.