Emily Whitehead Foundation

Nonprofit profile at a glance

EIN
472277599
IRS 990 coverage
2017–2025
Forms available
Form 990 2025, Form 990-EZ 2020, Form 990-N 2014
Location
Philipsburg, PA, USA
Phone
8145774784
Rating
70
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$840,948
Expenses
$908,610
Assets
$771,911
Liabilities
$136,223

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

18 people listed

Executive titles in this filing

  • GEORGE EASTWOOD (EXECUTIVE DIRECTOR)

Highest reported compensation

  • GEORGE EASTWOOD (EXECUTIVE DIRECTOR): $147,077 total reported compensation
  • KRISTINE BARRAS (DIRECTOR OF DEVELOPMENT): $87,446 total reported compensation
  • ADAM CLARK (DIRECTOR OF OPERATIONS): $77,885 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The emily whitehead foundations mission is to support patients and caregivers affected by cancer and rare diseases, and advocate for all patients who can be treated with advanced therapies.

What it reported doing in 2025

The foundation provides patient and caregiver support, education, connection and advocacy for individuals and families affected by cancer and rare diseases, with a particular focus on helping patients navigate advanced therapy treatment pathways. Believe bundles offer comfort during treatment and connect families to broader resources. Individualized support includes educational resources, peer and provider connections, and help navigating potential care and clinical research options. Advocacy elevates patient voices and engages stakeholders to reduce barriers to advanced therapies. In 2025 the foundation delivered 570 bundles, developed 22 hospital partnerships, supported 45 families, established 11 industry partnerships, and advocated at 44 industry and policy events. Believe bundles is a direct patient support program that provides tangible comfort and encouragement to patients undergoing treatment. Through this program, the foundation delivers thoughtfully assembled care packages designed to brighten hospital stays, provide emotional support, and remind patients and caregivers that they are not alone. Believe bundles also connect patients and families to the foundations broader support resources. In 2025 the foundation delivered believe bundles to 570 patients and developed 22 hospital partnerships to expand the programs reach and connect more families to patient support and advocacy resources. Patient and caregiver support provides education, resources, connection, and individualized assistance to patients, caregivers, and families affected by cancer and rare diseases. This program includes one-on-one support, hope and encouragement, patient- centered educational resources, peer connection with others who have relevant lived experience, healthcare provider connection, and help identifying and navigating potential care and clinical research options when appropriate. The foundation does not conduct clinical research through this program. In 2025, the foundation provided personalized one-on-one support to 45 families. Advocacy and access advances the foundations mission by elevating patient and caregiver voices and working to reduce barriers to advanced therapies. The foundation engages policymakers, researchers, clinicians, manufacturers, and other advanced therapy stakeholders to help ensure that patient experiences inform treatment development, healthcare delivery, access discussions, and public awareness. In 2025, the foundation established 11 industry partnerships, advocated at 44 industry and policy events, and continued to build relationships across the advanced therapies community in support of broader access to life-saving treatment options.

Operating model

Revenue model
Donor-supported. 95% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 99% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - The filed numbers largely add up and a large share of available resources goes toward mission work. Fundraising costs are high for each dollar raised and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 61
  • Transparency & Controls: 82
  • Accountability: 75
  • Sustainability: 22
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 69%; rating input score 69
  • Program expense ratio: 63.3%; rating input score 63
  • Fundraising efficiency: $4.03 raised per $1 spent on fundraising; rating input score 12; 12th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 86.7%; rating input score 87; 3rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 80%; rating input score 80; 21st percentile among comparable filings
  • Governance controls: 6 of 9 controls in place; rating input score 67
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Fail
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Fail
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -8%; rating input score 15; 15th percentile among comparable filings
  • Total-asset coverage ratio: 0.85; rating input score 38; 38th percentile among comparable filings
  • Liabilities to assets ratio: 0.18; rating input score 27; 27th percentile among comparable filings
  • Officer compensation ratio: 39.2%; rating input score 4; 4th percentile among comparable filings

Growth

  • Program expense growth: 12% per year; rating input score 100; 64th percentile among comparable filings
  • Revenue growth: 14.9% per year; rating input score 100; 74th percentile among comparable filings
  • Asset growth: 11.1% per year; rating input score 100; 59th percentile among comparable filings

Details

  • Where the money goes: 69% of revenue deployed · 63.3% of spending went to programs
  • Governance: 12 of 15 board members independent · 6 of 9 filing controls reported
  • Programs: 1 filed program accomplishment · $575K in reported program spending
  • Leadership: top reported pay $147K · 18 people listed
  • Consistency: 28 of 30 current checks pass · 2 findings to review
  • Schedules: 5 filed schedules · includes major donors
  • Filing history: 8 filing years from 2017 to 2025
  • Contacts: How to reach this organization
  • Money network: 6 filed money-flow records
  • 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.

Key Signals

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

  • High — Financial Efficiency: Fundraising efficiency scored 12/100.
  • Review — Accountability: Governance controls: 3 of 9 not reported.
  • High — Sustainability: Operating margin scored 15/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 38/100.
  • Moderate — Transparency & Controls: Schedule D expense reconciliation did not reconcile in the filed values.
  • Moderate — Transparency & Controls: Schedule D revenue reconciliation did not reconcile in the filed values.
  • High — Sustainability: Officer compensation ratio scored 4/100.
  • High — Sustainability: Liabilities to assets ratio scored 27/100.