Pediatric Brain Tumor Foundation of the United States Inc

EIN: 581966822 501(c)(3) Medical Research

Winston Salem, NC

Total Revenue
$5,039,446
Total Expenses
$6,650,108
Total Assets
$3,337,274
Net Assets
$2,146,181
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Financial Trends

Organization Details

Formation Year
1992
Legal Domicile
DE
Principal Officer
Geoff Still
Phone
8002536530
Tax Period
2023-10-01 to 2024-09-30

Pediatric Brain Tumor Foundation of the United States Inc, founded in 1992, is a community nonprofit in the Medical Research sector that reported $5.0M in total revenue in fiscal year 2023. Expenses of $6.7M exceeded revenue, resulting in a 32% operating deficit.

Mission

Vision A world without childhood brain tumors. Mission Care. Cure. Thrive.

Program Service Accomplishments

Program 1
Expenses: $5,167,796

The Pediatric Brain Tumor Foundation released the Voice of the Patient report, highlighting the impact of pediatric lowgrade glioma pLGG and the experiences of patients, families, and caregivers...

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The Pediatric Brain Tumor Foundation released the Voice of the Patient report, highlighting the impact of pediatric lowgrade glioma pLGG and the experiences of patients, families, and caregivers. Based on input from an Externally led Patient-Focused Drug Development EL-PFDD meeting and additional feedback, the report underscores the urgent need for innovative pLGG treatments with fewer side effects that preserve cognitive and functional abilities. Submitted to the FDA, this report represents a significant step in advocating for improved treatment options for the pLGG community. The FDAs approval of OJEMDA tovorafenib, for pediatric low-grade glioma pLGG, the most common brain tumor in children, was a significant breakthrough in treatment options. In 2007, a group of Boston-area families, shocked by the toxicity and lack of effectiveness of treatment options for their children, created the PLGA Foundation/A Kids Brain Tumor Cure AKBTC, to fund research dedicated to understanding and treating pLGG. The PLGA Foundation/AKBTC, which later became the PLGA Fund at PBTF, supported research and clinical trials that led to this breakthrough. PBTF played a key role in advancing OJEMDA by funding research and amplifying the patient voice, continuing its commitment to improving treatments for children with brain tumors. We also want to thank to Catching Up With Jack and the Hope for Kidsfund for their generous support of the novel therapeutic target grant, and Jacks Drive 55 Foundations contributions to both grants through PBTFs PLGA Fund. The Pediatric Brain Tumor Foundations partnership with Uber, launched in November 2024, provided affordable, reliable transportation to help families affected by pediatric brain tumors access critical medical care. This pilots success only reinforces the necessity of sustaining and expanding such initiatives to meet growing demand. 181 unique families were supported and 51 hospital partners engaged. This past holiday season, Jazwares played a crucial role in bringing joy to children in hospitals receiving treatment for brain tumors. Starting on Giving Tuesday, donations transformed into PBTF gifting a comforting Squishmallows to a child undergoing treatment for a brain tumor, generously donated by Jazwares. This initiative raised critical awareness, further engaging donors by transforming each contribution into a meaningful gesture of hope and generosity. Together, we connected with more patient families, care teams, and communities across the country, creating a collective effort to offer comfort, hope, and joy while advancing groundbreaking research, making the holiday season truly special for the children and families who needed it most. The Pediatric Brain Tumor Foundation PBTF is strengthening its efforts with new leadership andexpanded services. Scott Kennedy joins as Vice President of Medical Stewardship and Research, bringing 20 years of experience to drive innovation and family-focused funding. PBTF has also added a nurse navigator and bilingual social worker, with plans to grow nationwide support for families. These advancements reinforce PBTFs commitment to research and comprehensive family care. As we continue to build momentum in research, care, and board development, were excited to launch the Next Gen Leadership Initiative, a network of rising professionals dedicated to advancing PBTFs mission through fundraising, networking, and advocacy. Focused on sustainability and growth, this diverse group spans industries like finance, technology, and healthcare, with many having a personal connection to the cause. Starting in the NYC Metro area, the initiative aims to expand nationwide, empowering emerging leaders to create a lasting impact. The Hearst Foundation has awarded the Pediatric Brain Tumor Foundation a 100K grant to fund the first year of a 3-year Early Career Development ECD research award. This program supports young scientists in pediatric brain tumor research by providing resources, mentorship, and funding. By fostering fresh perspectives and innovative ideas, the program aims to advance treatments and ensure a strong pipeline of experts dedicated to improving outcomes for children and their families. With this vital funding, we are proud to support the next generation of researchers working tirelessly to discover a cure for pediatric brain tumors.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $4,881,230
Program Service Revenue $0
Investment Income $158,216
Other Revenue $0
TOTAL REVENUE $5,039,446

Expense Breakdown

Grants Paid $1,880,872
Salaries & Benefits $3,010,566
Fundraising Expenses $683,450
Program Expenses $5,167,796
Other Expenses $1,758,670
TOTAL EXPENSES $6,650,108

Year-over-Year Comparison

2023 2022 Change
Revenue $5,039,446 $5,058,429 0.0%
Expenses $6,650,108 $6,568,526 +0.0%
Net Income $-1,610,662 $-1,510,097 +0.1%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
13
Independent Members
12
Employees
24
Volunteers
475

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
5
$537,210
Total Directors
13
$0
Key Employees
5
$665,294
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Courtney Davies CEO/President through 9/25/24 050.00
Officer
$306,000 $33,145 $339,145
Geoff Still CFO/COO 050.00
Officer
$176,304 $21,761 $198,065
Ian M Joyce Chief Marketing Mission Experience Officer 040.00
Key Emp
$175,600 $21,729 $197,329
Robert McNamara Vice President of Development 040.00
Key Emp
$104,150 $23,821 $127,971
Kimberly Roy-Canning Director of Donor Relations 040.00
Key Emp
$100,902 $15,703 $116,605
Michael Henry Director of Advocacy 040.00
Key Emp
$105,595 $6,646 $112,241
Tammy Bates Senior Director of Operations 040.00
Key Emp
$104,081 $7,067 $111,148
Jeff Gelfand Chair 001.00
Officer Director
$0 $0 $0
Larry Little Secretary 001.00
Officer Director
$0 $0 $0
Chuck Boderman Vice Chair 001.00
Officer Director
$0 $0 $0
Andrew Janower Director 001.00
Director
$0 $0 $0
Karl Mueller Director 001.00
Director
$0 $0 $0
Ken Murphy Director 001.00
Director
$0 $0 $0
John Ragnoni Director 001.00
Director
$0 $0 $0
Anne Sutton Director 001.00
Director
$0 $0 $0
Kristin Young Director 001.00
Director
$0 $0 $0
Bryan Waddell Director 001.00
Director
$0 $0 $0
Peter Krause Treasurer 001.00
Director
$0 $0 $0
Katie Bernard Director Effective June 2024 001.00
Director
$0 $0 $0
Sanjay Gupta Director Effective April 2024 001.00
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 $5,039,446 $6,650,108 $3,337,274 $-1,610,662
2023 $5,058,429 $6,568,526 $5,390,187 $-1,510,097
2022 $6,022,145 $6,187,974 $5,993,060 $-165,829
2022 $5,677,466 $6,187,974 $5,648,381 $-510,508
2021 $5,999,996 $5,267,809 $6,277,731 $732,187
2019 $6,362,573 $7,128,175 $5,780,879 $-765,602
2018 $10,053,146 $5,067,839 $6,429,403 $4,985,307
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