Coffin-Siris Syndrome Foundation

Nonprofit profile at a glance

EIN
822116961
IRS 990-EZ coverage
2022–2025
Forms available
Form 990 2024, Form 990-EZ 2025, Form 990-N 2021
Location
Kirkland, WA, USA
Rating
80
Verdict
STRONG
Rating confidence
Moderate
Sector
Birth Defects and Genetic Diseases

Reported finances

Revenue
$151,428
Expenses
$119,879
Assets
$237,709

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

Leadership & pay

7 people listed

People named in this filing

  • Carissa Robinson (Chair)
  • Kristen McGraw (Treasurer)
  • Gaylen Mohre (Advocacy-Fundraising)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

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

Overview

Mission

Our mission is to support connect and inform the Coffin-Siris Syndrome community as well as promote and fund CSS-related research.

What it reported doing in 2025

CSSF Annual Conference -Provides an annual forum for family to gather socialize take part in learning opportunities and hear from experts. In 2025 124 families including 94 people with CSS and a total of 380 individuals attended the CSSF Conference in Denver CO

Operating model

Revenue model
Donor-supported. 73% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 85% 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

STRONG - The filed numbers largely add up and a large share of available resources goes toward mission work. Program spending has declined or grown slowly.

Rating breakdown

  • Financial Efficiency: 67
  • Transparency & Controls: 100
  • Sustainability: 65
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 61.4%; rating input score 61
  • Program expense ratio: 77.6%; rating input score 78

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100

Sustainability

  • Operating margin: 20.8%; rating input score 72; 72nd percentile among comparable filings
  • Total-asset coverage ratio: 1.98; rating input score 79; 79th percentile among comparable filings
  • Liabilities to assets ratio: Limited
  • Officer compensation ratio: 0%; rating input score 63; 63rd percentile among comparable filings

Growth

  • Program expense growth: -0.1% per year; rating input score 0; 29th percentile among comparable filings
  • Revenue growth: 21.3% per year; rating input score 100; 83rd percentile among comparable filings
  • Asset growth: 27.8% per year; rating input score 100; 84th percentile among comparable filings

Details

  • Where the money goes: 61.4% of revenue deployed · 77.6% of spending went to programs
  • Governance: Filed governance answers
  • Accomplishments: 3 filed program accomplishments · $93K in reported program spending
  • Leadership: top reported pay $0 · 7 people listed
  • Consistency: 8 of 8 current checks pass
  • Schedules: 3 filed schedules
  • Filing history: 3 filing years from 2022 to 2025
  • Contacts: How to reach this organization
  • Money network: Resolved incoming and outgoing counterparties from filed money flows.
  • Related organizations: Filed and resolved organization relationships.
  • 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 — Growth: Program expense growth scored 0/100.