Mission
Our mission is to support connect and inform the Coffin-Siris Syndrome community as well as promote and fund CSS-related research.
Small Public Charity
Coffin-Siris Syndrome Foundation
Coffin-Siris Syndrome Foundation is a nonprofit organization categorized as Small Public Charity based in Kirkland, WA. Its most recent IRS filing (2025) reports revenue of $151K, expenses of $120K, total assets of $238K. Imperigo tracks 12 reported grant relationships connected to this organization totaling approximately $172K.
EIN: 822116961
Kirkland, WA
Birth Defects & Genetic Diseases
NTEE: G20
Latest filing: 2025
Total Revenue$151K
Total Expenses$120K
Total Assets$238K
Grant Records12
Funding Total$172K
Filing Years2022–2025
Where $100 goes at Coffin-Siris Syndrome Foundation
How Coffin-Siris Syndrome Foundation divides every $100 it spends, from its own Form 990-EZ filings, averaged across 4 years.
$92
Programs
the work itself
$8
Everything else
operations and overhead
Form 990-EZ reports program spending but doesn't separate management from fundraising, so those are shown together.
Inside the $92 for programs
$86
CSSF Annual Conference -Provides an annual forum for family to gather socialize take part in learning opportunities and hear from experts
$3
Community Support
$3
CSS Registry Support
Source: Form 990-EZ filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.
Sample Grants Received
GENERAL OPERATING SUPPORT
$40,000
FOR RECIPIENT'S EXEMPT PURPOSE
$10,000
$10,000
GENERAL SUPPORT
$9,886
For grant recipient's exempt purposes
$5,600
Showing up to 5 of 12 total records — full history available with membership.
Officers & Directors
Community Development
Becky Dubay
Chair
Carissa Robinson
Advocacy-Fundraising
Gaylen Mohre
New Diagnosis - Social Media
Katie Kneisel
Treasurer
Kristen Mcgraw
Conference
Parrish Burgess
Officer compensation and complete director data available with membership.
Top Grant Purposes
Financial Trends
| Year | Revenue | Expenses | Assets |
|---|---|---|---|
| 2025 | $151K | $120K | $238K |
| 2024 | $206K | $119K | $206K |
| 2023 | $128K | $120K | $119K |
| 2022 | $77K | $88K | $111K |
Between 2022 and 2025, reported annual revenue grew from $77K to $151K (+96%), with total assets most recently reported at $238K.
Interactive year-over-year charts and full filing details available with membership.