Children's Tumor Foundation

Nonprofit profile at a glance

EIN
132298956
IRS 990 coverage
2011–2024
Forms available
Form 990 2024
Location
New York, NY, USA
Phone
2123446633
Rating
80
Verdict
STRONG
Rating confidence
Standard
Sector
Nerve, Muscle, Bone Diseases Research

Official website

Reported finances

Revenue
$19,738,640
Expenses
$19,009,492
Assets
$30,677,831
Liabilities
$3,908,305

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

39 people listed

Executive titles in this filing

  • ANNETTE BAKKER (PRESIDENT)
  • BARBARA GALLAGHER (VICE PRESIDENT OF DEV.)

Highest reported compensation

  • ANNETTE BAKKER (PRESIDENT): $468,352 total reported compensation
  • BRIGID GARELIK (CHIEF MEDICAL OFFICER): $404,635 total reported compensation
  • SIMON VUKELJ (CHIEF MARKETING OFFICER): $276,919 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Our mission: drive research, expand knowledge, and advance care for the nf community. Our vision: end nf.

What it reported doing in 2024

Research - the children's tumor foundation supports nf research through a range of funding mechanisms. Our investments in research are three-fold: 1) to attract talented investigators to nf research; 2) to support innovative research; and 3) to foster collaborative efforts to find treatments and cures for neurofibromatosis. The foundation has been at the forefront of key advances in nf research including funding the laboratories that discovered the nf1 and nf2 genes, supporting groundbreaking clinical trials, and establishing the first nationwide nf clinic network and nf patient registry. The foundation sponsors an annual scientific conference which brings researchers together to discuss the latest scientific developments related to nf. Additonally, our porgrams are designed to integrate with and support larger federally funded projects through the congressionally directed medical research program (cdmrp) and nih.

Operating model

Revenue model
Donor-supported. 96% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 66% for direct work, and 34% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 78
  • Transparency & Controls: 73
  • Accountability: 100
  • Sustainability: 48
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 81.8%; rating input score 82
  • Program expense ratio: 83.8%; rating input score 84
  • Fundraising efficiency: $12.13 raised per $1 spent on fundraising; rating input score 43; 43rd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 90%; rating input score 90; 3rd percentile among comparable filings
  • Pay-setting controls: 3 of 6 controls in place; rating input score 50
    • Compensation committee: Pass
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: 2 of 8 controls in place; rating input score 25
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Pass
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 99%; rating input score 99; 32nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 66th percentile among comparable filings
  • Governance controls: 9 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 3.7%; rating input score 49; 49th percentile among comparable filings
  • Total-asset coverage ratio: 1.61; rating input score 54; 54th percentile among comparable filings
  • Liabilities to assets ratio: 0.13; rating input score 69; 69th percentile among comparable filings
  • Officer compensation ratio: 13.9%; rating input score 10; 10th percentile among comparable filings

Growth

  • Program expense growth: 3.2% per year; rating input score 100; 28th percentile among comparable filings
  • Revenue growth: 3.9% per year; rating input score 100; 33rd percentile among comparable filings
  • Asset growth: 10.6% per year; rating input score 100; 67th percentile among comparable filings

Details

  • Where the money goes: 81.8% of revenue deployed · 83.8% of spending went to programs
  • Governance: 25 of 25 board members independent · 9 of 9 filing controls reported
  • Programs: 2 filed program accomplishments · $15.9M in reported program spending
  • Leadership: top reported pay $468K · 39 people listed · 3 of 6 pay-setting controls reported
  • Highest-paid contractors: 3 contractors listed · $738K reported
  • Consistency: 41 of 44 current checks pass · 3 findings to review
  • Schedules: 11 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 13 filing years from 2011 to 2024
  • Contacts: How to reach this organization
  • Money network: 60 filed money-flow records
  • Related organizations: 50 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Foreign activity oversight: 6 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 43/100.
  • Moderate — Sustainability: Operating margin scored 49/100.
  • Review — Sustainability: Total-asset coverage ratio scored 54/100.
  • High — Sustainability: Officer compensation ratio scored 10/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Review — Transparency & Controls: Schedule R controlled transactions itemized did not reconcile in the filed values.