PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC

Imagine a world without childhood brain tumors.

aka PBTF   |   Asheville, NC   |  www.curethekids.org

Mission

The Pediatric Brain Tumor Foundation works to eliminate the challenges of childhood brain tumors. As the world's largest nonprofit source of funding for 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 one of the deadliest forms of childhood cancer - Aid in the early detection and treatment of this disease - Support a national database on all primary brain tumors - Provide educational and emotional support for patients and families

Ruling year info

1992

President and CEO

Ms. Courtney Davies

Main address

302 Ridgefield Ct

Asheville, NC 28806 USA

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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.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Imagine a world without childhood brain tumors.
That's the future we're fighting for. The reality, though, is that 13 children and teens are diagnosed each day with a brain tumor, more children die of brain tumors than any other cancer, and survivors often face lifelong side effects and years of tests and treatments.

As the world's largest nonprofit dedicated to children and teens with brain tumors, 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

Fund research into cause and cure of children's brain tumors, provide family support and scholarships to brain tumor survivors.

Population(s) Served

Through our family support programs, resources and activities, we equip, educate and empower families. All services are free for pediatric brain tumor families, including emergency financial assistance, a practical toolkit for newly diagnosed families, brain tumor family camps and bereavement support.

Population(s) Served

Children and teens with brain tumors are the PBTF’s Stars, and we’re committed to helping these Stars shine. By uniting the pediatric brain tumor community around our shared mission, we can fight for the future every Star deserves – one free of physical, intellectual and psychological effects and recurrence.

Population(s) Served

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

Number of new donors

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of public events held to further mission

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of attendees present at rallies/events

This metric is no longer tracked.
Totals By Year
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.

As the world's largest nonprofit source of funding for pediatric brain tumor research, our mission is to cure the kids. 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 one of the deadliest forms of childhood cancer; Aid in the early detection and treatment of this disease; Support a national database on all primary brain tumors; and Provide educational and emotional support for patients and families

The Pediatric Brain Tumor Foundation imagines a world without childhood brain tumors.

Priority Objectives and Goals Established for the 2017-2019 Strategic Plan:

1. Equip, Educate and Empower Families
EQUIP
• Increase services to improve quality of life across continuum of care
• Connect families through a peer support network
EDUCATE
• Advance brain tumor education with online and in-person programs
• Expand relationships with top 40 pediatric brain tumor hospitals
EMPOWER
• Give patients, survivors and families a voice in shaping our programs
• Organize families to advocate for quality of life and survivorship issues

2. Expand the Field of Pediatric Brain Tumor Research
• Attract more researchers to the pediatric brain tumor field
• Influence scientific innovation through collaboratives
• Advance data-sharing and knowledge of tumor types

3. Motivate Action to Support Our Mission
• Unite the pediatric brain tumor community for greater impact
• Inspire and inform through national awareness campaigns
• Empower more donors, fundraisers and corporate supporters

For over 25 years, the Pediatric Brain Tumor Foundation has served as a leader in the brain tumor community by funding cut-edge research, while supporting families during a critical time. The Foundation employs 35 full-time employees in six states. In 2014, we established our first chapter in Atlanta, GA as a way to engage with more families. Additionally, we partner with over 2,000 volunteers each year. Volunteers provide critical support for our staff, particularly at events. Additional volunteers serve on boards, which include our Research Advisory Network. We've expanded our collaboration with similar organization because we believe that together we will be stronger for the kids and families in the aftermath of a brain tumor diagnosis. The Pediatric Brain Tumor Foundation is in the position to take a leadership role in moving the needle as we work to cure the kids.

The Pediatric Brain Tumor Foundation uses a report card to chart progress. The latest report, updated in January 2018, documents our progress through a completed, making progress, and progress needed system. All areas of the strategic plan are evaluated at least annually and this process has been useful in decision-making. Early accomplishments of the 2017-2019 strategic plan include identifying the top 40 hospitals treating children's brain tumors, growth in social media and web presence, and partnering with 11 organizations with similar missions. Work continues to progress in key areas such as increasing the number of families served each year and funding 100% of the top-ranked peer reviewed research applications.

Financials

PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES 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
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PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC

Board of directors
as of 3/26/2020
SOURCE: Self-reported by organization
Board chair

Mr. Andrew Janower

PBTF

Term: 2019 -

Chuck Boderman

No Affiliation

Larry Little

No Affiliation

Susie Rossick

No Affiliation

Jill Scognamiglio

No Affiliation

Anne Sutton

No Affiliation

Kurt Yndestad

No Affiliation

Chase Jones

No Affiliation

Doug Porter

No Affiliation

Karl Mueller

No Affiliation

Kristin Young

No Affiliation

Jeff Gelfand

No Affiliation

Andrew Janower

No Affiliation

John Ragnoni

No Affiliation