C & S Patient Education Foundation

Nonprofit profile at a glance

EIN
200904691
IRS 990 coverage
2016–2025
Forms available
Form 990 2025
Location
Wexford, PA, USA
Phone
7249400116
Rating
67
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Public Health Program (Includes General Health and Wellness Promotion Services)

Official website

Reported finances

Revenue
$417,470
Expenses
$393,060
Assets
$687,733
Liabilities
$39,273

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

Leadership & pay

5 people listed

Executive titles in this filing

  • RICHARD LABUDA (EXECUTIVE DIRECTOR, SECRET)
  • RICHARD KUSHNER (PRESIDENT, BOARD MEMBER)
  • DAVID LEE (VICE PRESIDENT, BOARD MEMB)

Highest reported compensation

  • RICHARD LABUDA (EXECUTIVE DIRECTOR, SECRET): $119,077 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 organization is dedicated to improving the experiences and outcomes of chiari and syringomelia patients by: 1.providing accurate, up-to-date, and easy to understand information to patients so that they can take control of their health care and make intelligent, informed decisions. 2. Raising awareness among family, friends, and the general public so that they can better understand what patients are going through and are better able to provide support. 3.raising awareness among, and providing accruate, up-to-date information to the medical community, so that errors in diagnosis and treatment are reduced. 4.sponsoring research to advance the understanding of these conditions and in the end conquer chiari.

What it reported doing in 2025

Grants for research projects focused on improving diagnostics, assessing the cognitive effects of chiari, genetics research, and other critical areas. Most funding is directed towards the conquer chiari research center (ccrc), the world's first research laboratory dedicated solely to advancing the medical and scientific understanding of chiari malformation. The ccrc is a state of the art facility, staffed with distinguished researchers, working diligently to: apply the latest engineering techniques and analysis to improve diagnoses and treatment options, leverage the conquer chiari patient registry to study the epidemiology and natural history of chiari, foster collaborations with leading clinicians and scientists to advance the conquer chiari research agenda and act as a focal point for the chiari research.

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 68% for direct work, and 32% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and a relatively small share of total spending goes to programs.

Rating breakdown

  • Financial Efficiency: 51
  • Transparency & Controls: 90
  • Accountability: 83
  • Sustainability: 44
  • Growth: 20

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 55.3%; rating input score 55
  • Program expense ratio: 57%; rating input score 57
  • Fundraising efficiency: $3.83 raised per $1 spent on fundraising; rating input score 17; 17th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 94.1%; rating input score 94; 27th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 81st percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 80%; rating input score 80; 23rd percentile among comparable filings
  • Governance controls: 7 of 8 controls in place; rating input score 88
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Fail
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 5.8%; rating input score 49; 49th percentile among comparable filings
  • Total-asset coverage ratio: 1.75; rating input score 56; 56th percentile among comparable filings
  • Liabilities to assets ratio: 0.06; rating input score 26; 26th percentile among comparable filings
  • Officer compensation ratio: 30.3%; rating input score 11; 11th percentile among comparable filings

Growth

  • Program expense growth: -10.9% per year; rating input score 0; 10th percentile among comparable filings
  • Revenue growth: -3.8% per year; rating input score 0; 10th percentile among comparable filings
  • Asset growth: 6.4% per year; rating input score 100; 50th percentile among comparable filings

Details

  • Where the money goes: 55.3% of revenue deployed · 57% of spending went to programs
  • Governance: 4 of 5 board members independent · 7 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $224K in reported program spending
  • Leadership: top reported pay $119K · 5 people listed
  • Consistency: 28 of 29 current checks pass · 1 finding to review
  • Schedules: 7 filed schedules · includes major donors and grants
  • Filing history: 10 filing years from 2016 to 2025
  • Contacts: How to reach this organization
  • Money network: 3 filed money-flow records
  • Related organizations: 2 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.

Key Signals

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

  • Review — Financial Efficiency: Mission deployment rate scored 55/100.
  • Review — Financial Efficiency: Program expense ratio scored 57/100.
  • High — Financial Efficiency: Fundraising efficiency scored 17/100.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • Moderate — Sustainability: Operating margin scored 49/100.
  • Review — Accountability: Governance controls: Audit committee oversight not reported.
  • Review — Sustainability: Total-asset coverage ratio scored 56/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • High — Sustainability: Officer compensation ratio scored 11/100.
  • High — Sustainability: Liabilities to assets ratio scored 26/100.