PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC

A world without childhood brain tumors.

aka PBTF   |   Atlanta, GA   |  www.curethekids.org

Mission

The Pediatric Brain Tumor Foundation works to eliminate the challenges of childhood brain tumors. As the largest patient advocacy funder of pediatric brain tumor research, our mission is to Care. Cure. Thrive. To accomplish our mission, we aim to: - Fund research to find the cause of and cure for pediatric brain tumors - Increase public awareness about the severity and prevalence of the deadliest form of childhood cancer - Aid in the early detection and treatment of this disease - Provide educational, financial and emotional support to patients and families - Advance the adoption of survivorship care plans to improve quality of life

Ruling year info

1992

President and CEO

Ms. Courtney Davies

Main address

6065 Roswell Road NE Suite 505

Atlanta, GA 30328 USA

Show more contact info

EIN

58-1966822

NTEE code info

Cancer (G30)

Brain Disorders (G48)

Cancer Research (H30)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2019, 2018 and 2017.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

More than 28,000 children in the U.S. are currently battling a brain tumor diagnosis, the deadliest form of childhood cancer and most common cancer in children under 15. Far too many face a 0% chance of long-term survival, and those who do survive must navigate the constant threat of recurrence and lifelong physical, cognitive and emotional side effects. Yet, childhood brain cancer has taken the backseat in research funding and awareness because the size of the population affected is small – defined as rare. We must stop minimizing the problem and defining this disease by the number of diagnoses because we are failing these children and their loved ones. As the largest patient advocacy funder of pediatric brain tumor research and the leading champion for families and survivors, the Pediatric Brain Tumor Foundation's mission is to care for families along their entire journey, cure every childhood brain tumor, and help survivors and families thrive.

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

PBTF is the world's largest patient advocacy funder of childhood brain tumor research. Our seed funding paves the way to a deeper understanding of the unique biology of childhood brain tumors, resulting in cutting-edge technologies that more quickly and accurately monitor disease progression, new therapies that target tumors’ specific vulnerabilities, and multi-million-dollar grants that have multiplied initial funding’s impact. PBTF funding supports early career investigators, basic science exploration, collaborative research programs, clinical trials, and infrastructure and core resources to accelerate and expand "pediatric-first" brain tumor research.

Population(s) Served
Children and youth

PBTF’s community of support helps patient families face the overwhelming adversities of the pediatric brain tumor journey, from the moment that symptoms start, through diagnosis, treatment, and beyond. Informed by patient families’ experiences and covering the entire continuum of care, PBTF offers opportunities to connect with healthcare experts, practical resources, and other families who have personally experienced the challenges of a child’s brain tumor diagnosis.

Population(s) Served
Children and youth

Once a patient finishes treatment for a childhood brain tumor, the journey has only begun. Survivors need to know what to do to stay healthy, keep health insurance as they get older, thrive in school, find a job, and navigate life after treatment ends. PBTF equips survivors and family members with information about navigating post-treatment life, such as cognitive and social skill challenges, relationships with siblings, and survivorship care plans.

Population(s) Served
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
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Total dollar amount of financial relief provided to patient families in treatment

This metric is no longer tracked.
Totals By Year
Related Program

Family Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total dollar amount of active grants in foundation's research portfolio

This metric is no longer tracked.
Totals By Year
Related Program

Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of times patient families accessed support programs and resources

This metric is no longer tracked.
Totals By Year
Related Program

Family Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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.

The Pediatric Brain Tumor Foundation works to eliminate the challenges of childhood brain tumors. As the largest patient advocacy funder of pediatric brain tumor research, our mission is to Care. Cure. Thrive.

To accomplish our mission, we aim to:
- Fund research to find the cause of and cure for pediatric brain tumors
- Increase public awareness about the severity and prevalence of the deadliest form of childhood cancer
- Aid in the early detection and treatment of this disease
- Provide educational, financial and emotional support to patients and families
- Advance the adoption of survivorship care plans to improve quality of life

The Pediatric Brain Tumor Foundation's vision is a world without childhood brain tumors. Priority focus areas and objectives for our current strategic plan include:

1. Improve patient family-centered outcomes and experience
• Serve as first point of contact for families with a new pediatric brain tumor diagnosis
• Advance adoption of survivorship care plans to improve quality of life
• Reduce racial, social and economic disparities in care outcomes for pediatric brain tumor patients
• Reduce total diagnostic interval in the U.S. for children with brain tumors

2. Accelerate and Expand "Pediatric-first" Brain Tumor Research
• Drive basic science exploration
• Accelerate clinical research outcomes
• Foster collaboration across the international brain tumor and childhood cancer research communities
• Develop early career investigators
• Provide infrastructure and core resource grants that accelerate the pace of pediatric brain tumor research programs

3. Mobilize and unite the community for change
• Inspire the cancer community to engage in the mission through fundraising and advocacy
• Engage patient families, care partners and researchers to inform and shape programs and priorities
• Collaborate with care centers and engage other organizations to amplify efforts

A leader in the brain tumor and childhood cancer communities, the Pediatric Brain Tumor Foundation's mission of Care. Cure. Thrive. reflects our commitment to curing all pediatric brain tumors and transforming how children and their families are cared for. Since 1991, we have provided strategic leadership and nearly $50million in funding to accelerate the number of targeted therapies for children battling brain tumors today, while equipping families with the patient-family education, financial relief, and emotional support they need to navigate their child's journey. The Foundation employs over 20 full-time employees across the United States. We are supported in our efforts through volunteers, including our Board of Directors, Research Advisory Network, Family Support Council and volunteer leaders, ambassadors and committees for our signature and community fundraising programs. We've expanded our collaboration with similar organizations because we believe a world without childhood brain tumors is possible when we work together to put kids first.

Informed by a community needs assessment and landscape analysis, the Pediatric Brain Tumor Foundation developed its latest strategic plan in 2021. The Foundation uses Cascade Strategy Software to continually measure progress and ensure alignment, with teams evaluating and reporting on progress quarterly. Using Cascade as a strategic tool, the staff have aligned their functions and roles to the strategic plan in order to meet mission specific objectives. The Board is fully engaged and helping to support both existing and new initiatives to help achieve goals and objectives.



Financials

PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

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.

lock

Connect with nonprofit leaders

Subscribe

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.

PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC

Board of directors
as of 03/23/2022
SOURCE: Self-reported by organization
Board chair

Mr. Andrew Janower

Charlesbank Capital Partners

Term: 2019 -

Chuck Boderman

No Affiliation

Larry Little

No Affiliation

Susie Rossick

No Affiliation

Jill Scognamiglio

No Affiliation

Anne Sutton

No Affiliation

Chase Jones

No Affiliation

Karl Mueller

No Affiliation

Kristin Young

No Affiliation

Jeff Gelfand

No Affiliation

Andrew Janower

No Affiliation

John Ragnoni

No Affiliation

Ken Murphy

No Affiliation

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

Organizational demographics

SOURCE: Self-reported; last updated 1/17/2022

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
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data