The Brain Tumor Network Inc

Guiding patients. Empowering care

Ponte Vedra Beach, FL   |  www.braintumornetwork.org

Mission

To assist adults in the USA who have been diagnosed with a primary brain tumor in exploring and navigating to applicable treatment options. Navigation services include seeking clinical trials, second opinions, and accessible treatment expertise.

Ruling year info

2014

President

Mr. Frederick B. Sontag

Main address

816 A1A North, Suite 207

Ponte Vedra Beach, FL 32082 USA

Show more contact info

EIN

46-3339186

NTEE code info

Alliance/Advocacy Organizations (E01)

IRS filing requirement

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

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Communication

Programs and results

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

Adults in the USA who have been diagnosed witha primary brain tumor may call BTN or submit an online consultation request for personalized clinical trial searches or assistance in finding clinical expertise or second opinions.

Population(s) Served
Adults
People with diseases and illnesses

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

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

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
participation
* 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.
  • Who are the people you serve with your mission?

    We serve patients who have been diagnosed with a brain tumor in the US and their caregivers.

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

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person),

  • 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,

  • What significant change resulted from feedback?

    We transitioned to a conavigation model where every patient/caregiver will work with both a nurse and social worker.

  • With whom is the organization sharing feedback?

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

  • 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

The Brain Tumor Network 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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  • 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.

The Brain Tumor Network Inc

Board of directors
as of 05/24/2022
SOURCE: Self-reported by organization
Board chair

Frederick Sontag

Spring Bay Companies

Term: 2013 -

Daniel Ryan

Spring Bay Companies

Clay Tousey, III

Fisher Tousey

Kent New, MD

Kay Verble

Sontag Foundation

Jill Wyant

Ecolab

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? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
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

Disability

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.