The Brain Tumor Network Inc

Guiding patients. Empowering care.

Ponte Vedra Beach, FL   |
GuideStar Charity Check

The Brain Tumor Network Inc

EIN: 46-3339186


To provide free, individualized navigation to help patients and loved ones manage a primary brain tumor diagnosis, overcome treatment obstacles, and facilitate access to quality healthcare.

Ruling year info



Mr. Frederick B. Sontag

Main address

816 A1A North, Suite 207

Ponte Vedra Beach, FL 32082 USA

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Subject area info


Population served info


People with diseases and illnesses

NTEE code info

Alliance/Advocacy Organizations (E01)

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


What we aim to solve

SOURCE: Self-reported by organization

Each year, 20,000 people are diagnosed with a brain tumor in the US. This devastating news can be overwhelming as there are many treatment options and approaches. It is crucial to be able to find the best care possible for the specific type of tumor in order to increase survival rates and improve the quality of life. BTN provides these support services at no cost to patients and caregivers. By reviewing the patient's medical records, our team of oncology navigators can offer suggested clinical trial options in their region and suggest medical centers for second opinions. A social worker is on staff to help provide wrap around services to patients beyond the immediate medical concerns, including referring patients and families to organizations that provide financial assistance.

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?

High touch treatment-related patient navigation services

Our dedicated neuro-oncology navigators meet patients and caregivers wherever they are in the brain tumor journey and provide ongoing education, empowerment, and support. Our free navigation services include:

Education on Diagnosis and Treatment Options
Second Opinions, Treatment Center Identification, and Physician-to-Physician Collaboration
Clinical Trial Search and Enrollment Assistance
Health Information Management
Psychosocial Support and Identification of Tools for Coping
Connection to Community and Family Resources

Population(s) Served
People with diseases and illnesses
Children and youth

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 overall donors

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

Adults, Children and youth

Related Program

High touch treatment-related patient navigation services

Type of Metric

Output - describing our activities and reach

Direction of Success


Number of clients served

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

People with diseases and illnesses

Related Program

High touch treatment-related patient navigation services

Type of Metric

Output - describing our activities and reach

Direction of Success


Context Notes

These numbers reflect patients and/or caregivers receiving navigation services.

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.

BTN aims to deliver the high quality, efficient and compassionate navigation services to help patient and caregivers find the best treatment options and support services to those diagnosed with a primary brain tumor. Our goal is to help patients and families feel more empowered with information provided to them, and have more options to choose from.

BTN is also has a goal of ensuring mission sustainability by implementing mission advancing marketing and development programs.

The strategies we employ are:

* Assist locating physicians with expertise in treating brain tumors – close to patient’s home or nationwide
* Facilitate second opinions/consultations including gathering relevant medical records to share with physicians in advance of appointments
* Conduct personalized clinical trial searches for patients and their physicians; assist with communications with trial sites and logistics for
* Advocate shared decision-making
* Facilitate patient’s access to quality care throughout survivorship including supplemental and support services

BTN has a highly accomplished staff with an extensive understanding of neuro-oncology. The professional team is comprised of nurses, social workers, and medical advisors.

BTN was founded by and remains a close collaborator with the Sontag Foundation. The Sontag Foundation has a network of close relationships with healthcare providers throughout the country who specialize in brain tumor treatment. Through this partnership, BTN is able to work with these experts to provide the best care to patients while keeping abreast of the most novel clinical trials and developments in the brain cancer field.

BTN has developed a proprietary software to help facilitate efficient navigation for patients. It has the resources to expand and is poised and ready to serve more patients and families.

Brain Tumor Network was launched in 2014 with a nurse navigator serving 22 patients the first year. Since that time, the organization has:

*strategically grown to a staff of 16 including nurses, social workers, and a health informatics staff
*served 1700 patients to date (including support group members) with a growing number of patients each year
*created and implemented a proprietary software system to help provide efficient and rapid clinical trial information to patients
*launched a periodic symposium for patients and caregivers for indepth information and support
*held a monthly brain tumor support group
*served as a model for other support groups across the country

Our current goals are to:
*expand services to serve 1000 patients annually by 2023
*develop and implement a comprehensive marketing program to recruit more patients/caregivers across the country
*continue to expand the board of directors to reflect a national representation
*review and refine operations and technology systems to ensure optimal service to increased patient caseloads by the end of 2022

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

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To strengthen relationships with the people we serve

  • 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 engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback


The Brain Tumor Network Inc
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2021 info

SOURCE: IRS Form 990


Average of 163.16 over 8 years

Months of cash in 2021 info

SOURCE: IRS Form 990


Average of 4.4 over 8 years

Fringe rate in 2021 info

SOURCE: IRS Form 990


Average of 18% over 8 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

The Brain Tumor Network Inc

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

The Brain Tumor Network Inc

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

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 ending: cloud_download Download Data

The Brain Tumor Network Inc

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of The Brain Tumor Network 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.

Created in partnership with

Business model indicators

Profitability info 2017 2018 2019 2020 2021
Unrestricted surplus (deficit) before depreciation $720 $4,830,583 -$826,960 -$1,471,186 $325,805
As % of expenses 0.1% 632.8% -63.2% -84.5% 17.3%
Unrestricted surplus (deficit) after depreciation $720 $4,830,583 -$826,960 -$1,475,326 $256,937
As % of expenses 0.1% 632.8% -63.2% -84.5% 13.2%
Revenue composition info
Total revenue (unrestricted & restricted) $674,589 $5,594,003 $481,878 $278,034 $2,280,455
Total revenue, % change over prior year 16.7% 729.2% -91.4% -42.3% 720.2%
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 0.0% 0.4% 24.4% 5.8% 0.0%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 100.0% 99.6% 75.6% 94.2% 81.1%
Other revenue 0.0% 0.0% 0.0% 0.0% 18.8%
Expense composition info
Total expenses before depreciation $673,869 $763,355 $1,308,903 $1,741,468 $1,881,581
Total expenses, % change over prior year 19.1% 13.3% 71.5% 33.0% 8.0%
Personnel 59.1% 71.6% 74.9% 81.9% 77.5%
Professional fees 29.4% 15.0% 13.5% 8.0% 9.9%
Occupancy 0.0% 5.3% 5.3% 4.1% 3.9%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 0.0% 0.0% 0.0% 0.0% 0.0%
All other expenses 11.5% 8.1% 6.3% 5.9% 8.7%
Full cost components (estimated) info 2017 2018 2019 2020 2021
Total expenses (after depreciation) $673,869 $763,355 $1,308,903 $1,745,608 $1,950,449
One month of savings $56,156 $63,613 $109,075 $145,122 $156,798
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $0 $0
Total full costs (estimated) $730,025 $826,968 $1,417,978 $1,890,730 $2,107,247

Capital structure indicators

Liquidity info 2017 2018 2019 2020 2021
Months of cash 0.7 1.8 28.3 0.4 1.6
Months of cash and investments 0.7 76.7 37.2 18.0 16.6
Months of estimated liquid unrestricted net assets 0.7 76.6 37.1 17.7 18.0
Balance sheet composition info 2017 2018 2019 2020 2021
Cash $41,214 $117,568 $3,087,754 $63,115 $251,533
Investments $0 $4,762,637 $974,255 $2,552,497 $2,351,722
Receivables $0 $0 $0 $0 $0
Gross land, buildings, equipment (LBE) $0 $0 $0 $0 $0
Accumulated depreciation (as a % of LBE) 0.0% 0.0% 0.0% 0.0% 0.0%
Liabilities (as a % of assets) 0.8% 0.2% 0.4% 6.9% 0.4%
Unrestricted net assets $0 $0 $0 $2,569,183 $2,826,120
Temporarily restricted net assets $0 $0 N/A N/A N/A
Permanently restricted net assets $0 $0 N/A N/A N/A
Total restricted net assets $0 $0 $0 $7,753 $80,822
Total net assets $40,886 $4,871,469 $4,044,509 $2,576,936 $2,906,942

Key data checks

Key data checks info 2017 2018 2019 2020 2021
Material data errors No No No No No


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

Letter of Determination is not available for this organization
Form 1023/1024 is not available for this organization


Mr. Frederick B. Sontag

Rick’s wife Susan was diagnosed with brain cancer in 1994. So Rick knows from personal experience the difficulty of navigating the medical system to find the best course of treatment. His experience helped inspire the formation of The Brain Tumor Network. Rick was formerly the President of Unison Industries, an aviation components manufacturer, which was sold to General Electric in 2002. Today Rick manages an investment business and is the President of The Sontag Foundation, a major sponsor of brain cancer related research, in addition to his duties at BTN. Rick sees BTN as the fulfillment of his dream of providing brain tumor patients with objective, viable advice when they are faced with the uncertainty that comes with a brain tumor diagnosis.

Number of employees

Source: IRS Form 990

The Brain Tumor Network Inc

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

The Brain Tumor Network Inc

Board of directors
as of 07/25/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Frederick Sontag

Spring Bay Companies

Term: 2013 -

Daniel M Ryan

Spring Bay Companies

David J Foster


Kent C New, MD

Kay W Verble

Community Volunteer

Jill Wyant


Hilary Keeley

Sontag Foundation

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? No

Organizational demographics

SOURCE: Self-reported; last updated 3/29/2022

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.


The organization's leader identifies as:

Race & ethnicity
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity


Sexual orientation

No data


No data

Equity strategies

Last updated: 04/09/2021

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

Policies and processes
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.


Fiscal year ending
There are no fundraisers recorded for this organization.