Nonprofit · EIN 06-1057497
CORNELIA DE LANGE SYNDROME FOUNDATION INC
Tax-exempt · AVON, CT 06001
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $1,085,462 | $1,114,037 | -$28,575 | $3,356,963 | $88,523 | $3,268,440 |
| December 31, 2023 | 990 | $945,606 | $993,059 | -$47,453 | $3,267,499 | $163,765 | $3,103,734 |
| December 31, 2022 | 990 (amended) | $1,084,533 | $1,079,254 | $5,279 | $3,082,093 | $202,297 | $2,879,796 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $856,146
- Program service revenue
- $40,895
- Investment income
- $71,984
- Net gain from sales of assets
- $12,553
- Net income from fundraising events
- $116,437
- Other revenue
- $116,437
Expenses
- Grants and similar amounts paid
- $0
- Compensation of officers, directors and key employees
- $131,249
- Other salaries and wages
- $518,069
- Salaries, compensation and benefits (total)
- $743,254
- Professional fundraising fees
- $0
- Occupancy
- $59,340
- Depreciation
- $3,749
- Program services (functional)
- $846,027
- Management and general (functional)
- $145,633
- Fundraising (functional)
- $122,377
Balance sheet and other
- Total assets, start of year
- $3,267,499
- Total assets, end of year
- $3,356,963
- Total liabilities, end of year
- $88,523
- Net assets, end of year
- $3,268,440
- Land, buildings and equipment
- $3,250
- Publicly traded securities
- $2,602,105
- Net assets without donor restrictions
- $3,080,492
- Net assets with donor restrictions
- $187,948
- Gross receipts
- $1,156,581
- Employees
- 12
- Volunteers
- 250
- Year formed
- 1981
- State of legal domicile
- MA
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 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Morrisette Royster | Executive Dir. Officer | 40 | $131,250 |
| Antonie Kline MD | MD Director Officer | 0 | $15,075 |
| Mike Feehan | Vice President Trustee or director, Officer | 1 | $0 |
| Rob Rodriguez | Director Trustee or director | 1 | $0 |
| Arthur Lander | Director Trustee or director | 1 | $0 |
| Eric Johnson | Treasurer Trustee or director, Officer | 1 | $0 |
| Steve Snodsmith | Director Trustee or director | 1 | $0 |
| Nicholas Jackson | Secretary Trustee or director, Officer | 1 | $0 |
| Yvonne Alston | Director Trustee or director | 1 | $0 |
| Paul Villani | President Trustee or director, Officer | 1 | $0 |
| Mary Ann Ehlert | Director Trustee or director | 1 | $0 |
| Tricia Wise | Director Trustee or director | 1 | $0 |
990 for the year ended December 31, 2023: 14 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Morrisette Royster | Executive Dir. Officer | 40 | $116,737 |
| Antonie Kline MD | MD Director Officer | 0 | $13,500 |
| Mike Feehan | Vice President Trustee or director, Officer | 1 | $0 |
| Mike Christie | Director Trustee or director | 0 | $0 |
| Arthur Lander | Director Trustee or director | 0 | $0 |
| Eric Johnson | Treasurer Trustee or director, Officer | 1 | $0 |
| Steve Snodsmith | Director Trustee or director | 0 | $0 |
| Nicholas Jackson | Secretary Trustee or director, Officer | 1 | $0 |
| Jennifer Gerton | Director Trustee or director | 0 | $0 |
| Yvonne Alston | Director Trustee or director | 0 | $0 |
| Paul Villani | Director Trustee or director | 0 | $0 |
| Katherina Nikzah-Terhune | President Trustee or director, Officer | 1 | $0 |
| Mary Ann Ehlert | Director Trustee or director | 0 | $0 |
| Tricia Wise | Director Trustee or director | 0 | $0 |
990 for the year ended December 31, 2022: 16 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Morrisette Royster | Executive Dir. Officer | 40 | $111,395 |
| Mike Feehan | Vice President Trustee or director, Officer | 0 | $0 |
| Mike Christie | Director Trustee or director, Officer | 0 | $0 |
| Arthur Lander | Director Trustee or director | 0 | $0 |
| Emily Turner | Director Trustee or director | 0 | $0 |
| Eric Johnson | Treasurer Trustee or director, Officer | 0 | $0 |
| Steve Snodsmith | Director Trustee or director | 0 | $0 |
| Angie Young | Director Trustee or director | 0 | $0 |
| Nicholas Jackson | Secretary Trustee or director, Officer | 0 | $0 |
| Jennifer Gerton | Director Trustee or director | 0 | $0 |
| Yvonne Alston | Director Trustee or director | 0 | $0 |
| Paul Villani | Director Trustee or director | 0 | $0 |
| Katherina Nikzah-Terhune | President Trustee or director, Officer | 0 | $0 |
| Mary Ann Ehlert | Director Trustee or director | 0 | $0 |
| Tricia Wise | Director Trustee or director | 0 | $0 |
| Antonie Kline MD | MD Director Officer | 0 | $0 |
Address and contacts
- Address (IRS master file)
- 30 TOWER LN STE 400, AVON, CT 06001-4231
- Principal officer (990 for 2024)
- Bonnie Royster
- Signed the 990
- Bonnie Royster, Exec. Director
- Phone
- (860) 676-8166
- Website
- WWW.CDLSUSA.ORG
- Return prepared by
- Bottaro Morrill & Co LLC
Mission
A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives.
Program accomplishments
- FAMILY SUPPORT PROGRAMSExpenses $440,507
- PUBLIC INFORMATION & EDUCATIONExpenses $220,780
- PROFESSIONAL EDUCATION OUTREACH & AWARENESSExpenses $179,924
- RESEARCHExpenses $4,816
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 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 06-1057497
- 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
- 1982
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Assets (IRS master file)
- $3,356,963
- Income (IRS master file)
- $1,156,581
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $1,085,462 | $1,114,037 | $3,356,963 | XML |
| 990 | December 2023 | $945,606 | $993,059 | $3,267,499 | XML |
| 990 | December 2022 | $1,084,533 | $1,079,254 | $3,082,093 | XML |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
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 06-1057497).
Questions about CORNELIA DE LANGE SYNDROME FOUNDATION INC
- What is the EIN of CORNELIA DE LANGE SYNDROME FOUNDATION INC?
- The employer identification number (EIN) of CORNELIA DE LANGE SYNDROME FOUNDATION INC is 06-1057497.
- Is CORNELIA DE LANGE SYNDROME FOUNDATION INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1982.
- Are donations to CORNELIA DE LANGE SYNDROME FOUNDATION INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does CORNELIA DE LANGE SYNDROME FOUNDATION INC 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 CORNELIA DE LANGE SYNDROME FOUNDATION INC due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did CORNELIA DE LANGE SYNDROME FOUNDATION INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of CORNELIA DE LANGE SYNDROME FOUNDATION INC?
- The 990 for the year ended December 31, 2024 names Bonnie Royster.
- Who are the officers and directors of CORNELIA DE LANGE SYNDROME FOUNDATION INC?
- The 990 for the year ended December 31, 2024 lists 12 people; 2 received compensation from the organization, the highest $131,250 (Morrisette Royster, Executive Dir.).
- How much revenue does CORNELIA DE LANGE SYNDROME FOUNDATION INC have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $1,085,462, expenses of $1,114,037 and total assets of $3,356,963 at year end.
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