International Foundation For Cdkl5 Research
- Assets
- $761.1k
- Revenue
- $639.2k
- Investments
- $0.0
- Employees
- 0
- Location
- Wadsworth, OH
- Founding
- 05/2010
- Data as of
- 12/2023
- EIN
- 27-0950477
Organization Overview
International Foundation For Cdkl5 Research is located in Wadsworth, OH. The organization was established in 2010. According to its NTEE Classification (T30) the organization is classified as: Public Foundations, under the broad grouping of Philanthropy, Voluntarism & Grantmaking Foundations and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. International Foundation For Cdkl5 Research is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2023, International Foundation For Cdkl5 Research generated $639.2k in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 9.0% each year. All expenses for the organization totaled $414.6k during the year ending 12/2023. While expenses have increased by 0.4% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2014, International Foundation For Cdkl5 Research has awarded 57 individual grants totaling $3,474,662. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
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.
Describe the Organization's Program Activity:
Part 3 - Line 4a
A NUMBER OF FUNDRAISERS WERE HELD IN 2023. IN ADDITION, CONTRIBUTIONS WERE RECEIVED FROM NUMEROUS INDIVIDUALS, CORPORATIONS, AND FOUNDATIONS. AS A RESULT, GRANTS TOTALING $197,884 WERE MADE DURING 2023 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.
Get More from Intellispect for FreeCreate a free account to get more data, nonprofit salaries, advanced search and more.
Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Karen Utley President | OfficerTrustee | 35 | $0 |
Rick Upp Vice President | OfficerTrustee | 15 | $0 |
Paul Miller Secretary | OfficerTrustee | 15 | $0 |
Amanda Jaksha Treasurer | OfficerTrustee | 15 | $0 |
Miriam Blase Director | Trustee | 1 | $0 |
Garrett Decker Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $56,529 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $574,259 |
| Noncash contributions included in lines 1a–1f | $42,217 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $630,788 |
| Total Program Service Revenue | $0 |
| Investment income | $3,044 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $639,182 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $197,884 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $0 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $1,250 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $141,348 |
| Advertising and promotion | $1,082 |
| Office expenses | $858 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $1,780 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $3,667 |
| Insurance | $2,864 |
| All other expenses | $54,463 |
| Total functional expenses | $414,598 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $284,614 |
| Savings and temporary cash investments | $289,364 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $3,399 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $165,432 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $18,333 |
| Other assets | $0 |
| Total assets | $761,142 |
| Accounts payable and accrued expenses | $1,432 |
| Grants payable | $194,759 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $196,191 |
| Net assets without donor restrictions | $564,951 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $761,142 |
Grants Awarded
Over the last fiscal year, International Foundation For Cdkl5 Research has awarded $192,884 in support to 5 organizations.
| Grant Recipient | Amount |
|---|---|
CHILDREN'S HOSPITAL PHILADELPHIA PURPOSE: Research | $50,000 |
VANDERBILT UNIVERSITY MEDICAL CENTER PURPOSE: 35000 | $35,000 |
BOSTON CHILDREN'S HOSPITAL PURPOSE: 72884 | $72,884 |
NYU SCHOOL OF MEDICINE PURPOSE: 25000 | $25,000 |
ORPHAN DISEASE CENTER AT UNIVERSITY OF PENNSYLVANIA PURPOSE: 10000 | $10,000 |