The Brain Tumor Network Inc
Guiding patients. Empowering care.
The Brain Tumor Network Inc
EIN: 46-3339186
as of September 2023
as of September 18, 2023
Mission
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
2014
President
Mr. Frederick B. Sontag
Main address
816 A1A North, Suite 207
Ponte Vedra Beach, FL 32082 USA
EIN
46-3339186
Health
Population served
Adults
People with diseases and illnesses
NTEE code
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
Communication
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
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
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
Where we work
External reviews
Videos
Our results
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
Increasing
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
Increasing
Context Notes
These numbers reflect patients and/or caregivers receiving navigation services.
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planLearn 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?
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.
What are the organization's key strategies for making this happen?
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
participation
* Advocate shared decision-making
* Facilitate patient’s access to quality care throughout survivorship including supplemental and support services
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
-
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
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2021 info
208.56
Months of cash in 2021 info
1.6
Fringe rate in 2021 info
19%
Funding sources info
Assets & liabilities info
Financial data
The Brain Tumor Network Inc
Balance sheetFiscal Year: Jan 01 - Dec 31
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
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 |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
President
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 employeesSOURCE: IRS Form 990
Compensation data
There are no highest paid employees recorded for this organization.
The Brain Tumor Network Inc
Board of directorsas of 07/25/2023
Board of directors data
Frederick Sontag
Spring Bay Companies
Term: 2013 -
Daniel M Ryan
Spring Bay Companies
David J Foster
Healthwise
Kent C New, MD
Kay W Verble
Community Volunteer
Jill Wyant
Ecolab
Hilary Keeley
Sontag Foundation
Board leadership practices
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
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
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 04/09/2021GuideStar 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 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.
Contractors
Fiscal year endingGuideStar Pro Reports
Report successfully added to your cart!
Want more data?
A GuideStar Pro report containing the following information is available for this organization:
- Email contact information
- Financial trends metrics for five most recent years 2021, 2020, 2019, 2018, 2017*
- Financial statements for 2021, 2020, 2019
- Officer and/or Employee data for 2021, 2020, 2019, 2018, 2017
- Contractor and/or Paid Preparer data for 2021, 2020, 2019
- Board of Directors data for 2023
- *with the ability to download the data for 2021, 2020, 2019, 2018, 2017
Download it now for $125.
Need the ability to download nonprofit data and more advanced search options?Consider a Pro Search subscription.