Nonprofit · EIN 27-0950477
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
Also known as IFCR
Tax-exempt · WADSWORTH, OH 44282
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $716,340 | $357,011 | $359,329 | $976,798 | $12,536 | $964,262 |
| December 31, 2023 | 990 | $639,182 | $414,598 | $224,584 | $761,142 | $196,191 | $564,951 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $712,663
- Program service revenue
- $0
- Investment income
- $3,677
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $120,515
- Salaries, compensation and benefits (total)
- $0
- Professional fundraising fees
- $0
- Accounting fees
- $1,624
- Travel
- $1,170
- Depreciation
- $7,334
- Program services (functional)
- $313,492
- Management and general (functional)
- $40,178
- Fundraising (functional)
- $3,341
Balance sheet and other
- Total assets, start of year
- $761,142
- Total assets, end of year
- $976,798
- Total liabilities, end of year
- $12,536
- Net assets, end of year
- $964,262
- Publicly traded securities
- $245,342
- Net assets without donor restrictions
- $964,262
- Gross receipts
- $718,028
- Employees
- 0
- Volunteers
- 12
- Year formed
- 2009
- State of legal domicile
- OH
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 |
|---|---|---|---|
| Karen Utley | President Trustee or director, Officer | 35 | $0 |
| Rick Upp | Vice President Trustee or director, Officer | 15 | $0 |
| Paul Miller | Secretary Trustee or director, Officer | 15 | $0 |
| Amanda Jaksha | Treasurer Trustee or director, Officer | 15 | $0 |
| Miriam Churgin | Director Trustee or director | 1 | $0 |
| Garrett Decker | Director Trustee or director | 1 | $0 |
| Marissa Bishop | Director Trustee or director | 1 | $0 |
| Melissa Ralston | Board Member Emeritus Trustee or director | 1 | $0 |
990 for the year ended December 31, 2023: 8 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Karen Utley | President Trustee or director, Officer | 35 | $0 |
| Rick Upp | Vice President Trustee or director, Officer | 15 | $0 |
| Paul Miller | Secretary Trustee or director, Officer | 15 | $0 |
| Amanda Jaksha | Treasurer Trustee or director, Officer | 15 | $0 |
| Miriam Blase | Director Trustee or director | 1 | $0 |
| Garrett Decker | Director Trustee or director | 1 | $0 |
| Marissa Bishop | Director Trustee or director | 1 | $0 |
| Melissa Ralston | Board Member Emeritus Trustee or director | 1 | $0 |
Address and contacts
- Address (IRS master file)
- PO BOX 926, WADSWORTH, OH 44282-0926
- Mailing address (990-N for 2009)
- PO Box 926, Wadsworth OH 44282
- Principal officer (990 for 2024)
- Karen Utley, 325 Brazoswood, Clute, TX 77531
- Principal officer (990-N for 2009)
- Katheryn Elibri Frame, 7313 Ridge Line Cir, Dexter MI 481308519
- Signed the 990
- Karen Utley, President
- Phone
- (979) 265-3411
- Website
- www.CDKL5.com
- Return prepared by
- JUDY L ARFA CPA PLLC
Mission
To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5.
Program accomplishments
- In 2024, cash and noncash contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $120,515 were made during 2024 to fund research that will lead to a cure for this very debilitating disease in the near future. The Organizations goals include aggressive research, studies to improve the quality of life for children with CDKL5, and testing of compounds to identify neurologic modifiers.Expenses $313,492 · grants $120,515
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
- 27-0950477
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2010
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Philanthropy, voluntarism and grantmaking foundations (T30)
- Assets (IRS master file)
- $976,798
- Income (IRS master file)
- $718,028
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $716,340 | $357,011 | $976,798 | IRS |
| 990 | December 2023 | $639,182 | $414,598 | $761,142 | XML |
| 990 | December 2022 | $606,589 | $725,710 | $631,046 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
| 990-N for 2009 Officer: Katheryn Elibri Frame | December 31, 2009 | ≤ $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 27-0950477).
Questions about INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
- What is the EIN of INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH?
- The employer identification number (EIN) of INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH is 27-0950477.
- Is INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2010.
- Are donations to INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH 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 INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH 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 INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH 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 INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH?
- The 990 for the year ended December 31, 2024 names Karen Utley.
- Who are the officers and directors of INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH?
- The 990 for the year ended December 31, 2024 lists 8 people; 0 received compensation from the organization.
- How much revenue does INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $716,340, expenses of $357,011 and total assets of $976,798 at year end.
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