Koolen-De Vries Syndrome Foundation
- Assets
- $580.6k
- Revenue
- $305.6k
- Investments
- $0.0
- Employees
- 0
- Location
- Wilmington, NC
- Founding
- 12/2013
- Data as of
- 12/2023
- EIN
- 46-3208388
Organization Overview
Koolen-De Vries Syndrome Foundation is located in Wilmington, NC. The organization was established in 2013. According to its NTEE Classification (G80) the organization is classified as: Specifically Named Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Koolen-De Vries Syndrome Foundation 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, Koolen-De Vries Syndrome Foundation generated $305.6k in total revenue. This organization has experienced exceptional growth, as over the past 6 years, it has increased revenue by an average of 19.9% each year . All expenses for the organization totaled $324.6k during the year ending 12/2023. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
THE KOOLEN-DE VRIES SYNDROME FOUNDATION IS AN INTERNATIONAL GROUP THAT (CONTINUED ON SCHEDULE O) SUPPORTS, INFORMS, AND NETWORKS WITH ANYONE AFFECTED BY KOOLEN-DE VRIES SYNDROME (KDVS) AND WITH ANY INTERESTED PROFESSIONALS. THE FOUNDATION'S ACTIVITIES INCLUDE SOCIAL GATHERINGS, PATIENT ADVOCACY SUMMITS, SUPPORTING RESEARCH, AND PROVIDING INFORMATION REGARDING KDVS TO BOTH THE GENERAL POPULATION AND MEDICAL PROFESSIONALS.
Describe the Organization's Program Activity:
Part 3 - Line 4a
PROMOTING RESEARCH OF KDVS IN FIELDS INCLUDING CLINICAL, DRUG THERAPY, SPEECH THERAPY, AND EPILEPSY.
PROVIDING PATIENT ADVOCACY SUMMITS AND SOCIAL GATHERING EVENTS FOR THE KDVS COMMUNITY AND INTERESTED MEDICAL PROFESSIONALS.
INCREASING AWARENESS OF KDVS IN BOTH THE GENERAL POPULATION AND MEDICAL PROFESSION.
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 |
|---|---|---|---|
Alayna Haynam Vice-President | OfficerTrustee | 5 | $0 |
Ashley Point President | OfficerTrustee | 5 | $0 |
Cindy Asbury Board Member | Trustee | 1 | $0 |
Emily Lemke Board Member | Trustee | 2 | $0 |
Gabriel Stagner Treasurer | OfficerTrustee | 5 | $0 |
Jessica Collier Board Member | Trustee | 2 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $260,020 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $260,020 |
| Total Program Service Revenue | $45,594 |
| Investment income | $7 |
| 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 | $305,621 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $159,372 |
| 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 | $8,526 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $11,484 |
| Advertising and promotion | $14,294 |
| Office expenses | $0 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $2,881 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $107,158 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $1,073 |
| All other expenses | $1,421 |
| Total functional expenses | $324,564 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $506,184 |
| Savings and temporary cash investments | $74,432 |
| 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 | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $580,616 |
| Accounts payable and accrued expenses | $0 |
| Grants payable | $0 |
| 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 | $0 |
| Net assets without donor restrictions | $374,997 |
| Net assets with donor restrictions | $205,619 |
| 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 | $580,616 |
Grants Awarded
Over the last fiscal year, Koolen-De Vries Syndrome Foundation has awarded $159,372 in support to 4 organizations.
| Grant Recipient | Amount |
|---|---|
EMORY UNIVERSITY PURPOSE: TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME | $57,500 |
ST JUDE PURPOSE: TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME | $20,000 |
CURE EPILEPSY PURPOSE: TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME | $29,500 |
UNIVERSITY OF CALIFORNIA SAN FRANCISCO PURPOSE: TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME | $52,372 |