Nonprofit · EIN 82-2116961
COFFIN-SIRIS SYNDROME FOUNDATION
Tax-exempt · KIRKLAND, WA 98034
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990-EZ | $151,428 | $119,879 | $31,549 | $237,709 | – | $237,709 |
| December 31, 2024 | 990 | $206,026 | $119,026 | $87,000 | $206,160 | $0 | $206,160 |
| December 31, 2023 | 990-EZ | $128,374 | $119,860 | $8,514 | $119,160 | – | $119,160 |
Financial details: 990-EZ for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $110,896
- Program service revenue
- $40,425
- Investment income
- $107
Expenses
- Grants and similar amounts paid
- $14,000
- Compensation of officers, directors and key employees
- $0
- Printing, publications and postage
- $5,682
- Other expenses
- $100,197
- Program services (functional)
- $92,987
Balance sheet and other
- Total assets, start of year
- $206,160
- Total assets, end of year
- $237,709
- Total liabilities, end of year
- –
- Net assets, end of year
- $237,709
- Cash, savings and investments
- $237,709
- Gross receipts
- $151,428
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990-EZ for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Carissa Robinson | Chair | 10 | $0 |
| Kristen McGraw | Treasurer | 5 | $0 |
| Gaylen Mohre | Advocacy-Fundraising | 5 | $0 |
| Becky Dubay | Community Development | 5 | $0 |
| Katie Kneisel | New Diagnosis - Social Media | 5 | $0 |
| Parrish Burgess | Conference | 5 | $0 |
| Simon Gale | Operations - Secretary | 5 | $0 |
990 for the year ended December 31, 2024: 7 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Carrissa Robinson | Chair Officer | 15 | $0 |
| Kristen McGraw | Board Member - Volunteer Officer | 5 | $0 |
| Gaylen Mohre | Board Member - Volunteer Officer | 5 | $0 |
| Amanda Cole | Board Member - Volunteer Officer | 5 | $0 |
| Becky Dubay | Board Member - Volunteer Officer | 5 | $0 |
| Katie Kneisel | Board Member - Volunteer Officer | 5 | $0 |
| Parrish Burgess | Board Member - Volunteer Officer | 5 | $0 |
990-EZ for the year ended December 31, 2023: 5 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Shauna Joy | Chair | 5 | $0 |
| Carissa Robinson | Board Member - Volunteer | 5 | $0 |
| Gaylen Mohre | Board Member - Volunteer | 5 | $0 |
| Kelley Abbot | Board Member - Volunteer | 5 | $0 |
| Mario Uzeta | Treasurer - Volunteer | 5 | $0 |
Address and contacts
- Address (IRS master file)
- 11611 106TH AVE NE, KIRKLAND, WA 98034-3934
- In care of
- % CARISSA ROBINSON
- Mailing address (990-N for 2021)
- 11611 106th Ave NE, Kirkland WA 98034
- Principal officer (990-N for 2021)
- Alyssa Cho, 15466 Long Castle Forest Ct, Chesterfield MO 63017
- Signed the 990-EZ
- Kristen McGraw, Treasurer
- Website
- coffinsiris.org
Mission
Our mission is to support connect and inform the Coffin-Siris Syndrome community as well as promote and fund CSS-related research.
Program accomplishments
- 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 COExpenses $89,972
- Community Support - Provide outreach and support to CSS families undergoing treatments or hardships. We sent 23 meals and care packages to families whose loved ones were sick or in the hospital.Expenses $3,015
- CSS Registry Support - Provided financial support to Seattle Childrens Hospital where the global CSS registry is maintainedgrants $14,000
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990-EZ on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990-EZ on file |
IRS record
- EIN
- 82-2116961
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (509(a)(2))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2018
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G20)
- Assets (IRS master file)
- $237,709
- Income (IRS master file)
- $151,428
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990-EZ | December 2025 | $151,428 | $119,879 | $237,709 | XML |
| 990 | December 2024 | $206,026 | $119,026 | $206,160 | XML |
| 990-EZ | December 2023 | $128,374 | $119,860 | $119,160 | XML |
| 990-EZ | December 2022 | – | – | – | IRS |
| 990-N for 2021 Officer: Alyssa Cho | December 31, 2021 | ≤ $50,000 receipts | – | – | e-Postcard |
| 990-N for 2020 Officer: Jonathan Robinson | December 31, 2020 | ≤ $50,000 receipts | – | – | e-Postcard |
| 990-N for 2019 Officer: Jonathan Robinson | December 31, 2019 | ≤ $50,000 receipts | – | – | e-Postcard |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 82-2116961).
Questions about COFFIN-SIRIS SYNDROME FOUNDATION
- What is the EIN of COFFIN-SIRIS SYNDROME FOUNDATION?
- The employer identification number (EIN) of COFFIN-SIRIS SYNDROME FOUNDATION is 82-2116961.
- Is COFFIN-SIRIS SYNDROME FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2018.
- Are donations to COFFIN-SIRIS SYNDROME FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does COFFIN-SIRIS SYNDROME FOUNDATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of COFFIN-SIRIS SYNDROME FOUNDATION due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did COFFIN-SIRIS SYNDROME FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990-EZ for the year ended December 2025.
- Who is the principal officer of COFFIN-SIRIS SYNDROME FOUNDATION?
- The 990-N for 2021 names Alyssa Cho.
- Who are the officers and directors of COFFIN-SIRIS SYNDROME FOUNDATION?
- The 990-EZ for the year ended December 31, 2025 lists 7 people; 0 received compensation from the organization.
- How much revenue does COFFIN-SIRIS SYNDROME FOUNDATION have?
- On its 990-EZ for the year ended December 31, 2025 it reported revenue of $151,428, expenses of $119,879 and total assets of $237,709 at year end.
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