National Brain Tumor Society, Inc.
Community here. Breakthroughs ahead.
National Brain Tumor Society, Inc.
EIN: 04-3068130
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
1994
Chief Executive Officer
Mr. David Arons, JD
Main address
55 Chapel Street Suite 006
Newton, MA 02458 USA
Formerly known as
Brain Tumor Society
EIN
04-3068130
Brain and nervous system disorders
Cancers
Population served
People with diseases and illnesses
NTEE code
Brain Disorders (G48)
Cancer (G30)
Cancer Research (H30)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Affiliations
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
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
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.
Patient Support
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.
Advocacy
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.
Where we work
External reviews
Our results
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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Conquering and curing brain tumors — once and for all.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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.
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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
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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.
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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
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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
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2020 info
6.04
Months of cash in 2020 info
13.5
Fringe rate in 2020 info
15%
Funding sources info
Assets & liabilities info
National Brain Tumor Society, Inc.
Revenue & expensesFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
National Brain Tumor Society, Inc.
Balance sheetFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Fiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
This snapshot of National Brain Tumor Society, Inc.’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
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Business model indicators
| Profitability info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $1,849,625 | $1,144,955 | $394,918 | $1,367,237 | $1,096,504 |
| As % of expenses | 25.7% | 13.4% | 4.4% | 14.2% | 15.3% |
| Unrestricted surplus (deficit) after depreciation | $1,803,737 | $1,131,516 | $383,845 | $1,358,691 | $1,091,717 |
| As % of expenses | 24.9% | 13.3% | 4.3% | 14.1% | 15.3% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $8,069,095 | $9,567,859 | $10,033,247 | $14,164,709 | $8,931,225 |
| Total revenue, % change over prior year | 10.8% | 18.6% | 4.9% | 41.2% | -36.9% |
| Program services revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 0.3% | 0.2% | 0.3% | 0.2% | 0.8% |
| Government grants | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| All other grants and contributions | 99.7% | 99.8% | 99.7% | 99.7% | 99.2% |
| Other revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.1% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $7,199,656 | $8,522,843 | $8,989,959 | $9,629,298 | $7,148,418 |
| Total expenses, % change over prior year | -17.4% | 18.4% | 5.5% | 7.1% | -25.8% |
| Personnel | 39.3% | 35.8% | 40.5% | 46.8% | 58.5% |
| Professional fees | 9.3% | 7.8% | 7.3% | 7.1% | 6.1% |
| Occupancy | 3.1% | 2.9% | 2.6% | 2.6% | 3.3% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 32.0% | 31.4% | 32.5% | 16.5% | 13.5% |
| All other expenses | 16.3% | 22.1% | 17.1% | 26.9% | 18.6% |
| Full cost components (estimated) info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $7,245,544 | $8,536,282 | $9,001,032 | $9,637,844 | $7,153,205 |
| One month of savings | $599,971 | $710,237 | $749,163 | $802,442 | $595,702 |
| Debt principal payment | $0 | $0 | $0 | $0 | $0 |
| Fixed asset additions | $0 | $0 | $0 | $12,364 | $0 |
| Total full costs (estimated) | $7,845,515 | $9,246,519 | $9,750,195 | $10,452,650 | $7,748,907 |
Capital structure indicators
| Liquidity info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Months of cash | 2.3 | 3.4 | 4.1 | 8.0 | 13.5 |
| Months of cash and investments | 3.0 | 4.0 | 4.9 | 9.1 | 15.0 |
| Months of estimated liquid unrestricted net assets | -0.9 | 0.8 | 1.3 | 2.9 | 5.7 |
| Balance sheet composition info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Cash | $1,405,475 | $2,407,896 | $3,088,930 | $6,422,000 | $8,059,747 |
| Investments | $398,801 | $401,713 | $581,854 | $849,578 | $869,348 |
| Receivables | $378,428 | $173,377 | $83,000 | $289,200 | $874,947 |
| Gross land, buildings, equipment (LBE) | $953,314 | $964,164 | $964,164 | $38,826 | $38,826 |
| Accumulated depreciation (as a % of LBE) | 97.4% | 97.8% | 98.9% | 63.6% | 75.9% |
| Liabilities (as a % of assets) | 92.8% | 62.9% | 43.7% | 13.1% | 14.7% |
| Unrestricted net assets | -$534,380 | $597,136 | $980,981 | $2,339,672 | $3,431,389 |
| Temporarily restricted net assets | $404,990 | $308,671 | $764,202 | N/A | N/A |
| Permanently restricted net assets | $296,654 | $296,654 | $489,753 | N/A | N/A |
| Total restricted net assets | $701,644 | $605,325 | $1,253,955 | $4,424,628 | $5,123,722 |
| Total net assets | $167,264 | $1,202,461 | $2,234,936 | $6,764,300 | $8,555,111 |
Key data checks
| Key data checks info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
Chief Executive Officer
Mr. David Arons, JD
David Arons is the Chief Executive Officer of National Brain Tumor Society. He previously served as the Director of Government Relations for the American Cancer Society in Minnesota and was the co-founder and Co-Director of the Center for Lobbying in the Public Interest in Washington D.C. As an attorney, he previously represented patients facing disabilities and serious health conditions. He serves on the National Cancer Institute’s Council of Research Advocates and Clinical Trials Advisory Committee. In 2016, Mr. Arons was a member of the National Cancer Moonshot’s Blue-Ribbon Panel, led by former Vice President Joe Biden.
Number of employees
Source: IRS Form 990
National Brain Tumor Society, Inc.
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
National Brain Tumor Society, Inc.
Highest paid employeesSOURCE: IRS Form 990
Compensation data
National Brain Tumor Society, Inc.
Board of directorsas of 03/03/2023
Board of directors data
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
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 10/07/2022GuideStar 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
- 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.
- 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.
Contractors
Fiscal year endingGuideStar Pro Reports
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- Letter of Determination
- Officer and/or Employee data for 2020, 2019, 2018, 2017, 2016
- Contractor and/or Paid Preparer data for 2020, 2019, 2018
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