Smith-Kingsmore Syndrome Foundation
- Assets
- $275.6k
- Revenue
- $172.2k
- Investments
- $0.0
- Employees
- 2
- Location
- Liberty Twp, OH
- Founding
- Data as of
- 06/2024
- EIN
- 84-2913037
Organization Overview
Smith-Kingsmore Syndrome Foundation is located in Liberty Twp, OH. 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. As of 06/2024, Smith-Kingsmore Syndrome Foundation employed 2 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Smith-Kingsmore 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 06/2024, Smith-Kingsmore Syndrome Foundation generated $172.2k in total revenue. All expenses for the organization totaled $349.4k during the year ending 06/2024.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2024
Describe the Organization's Mission:
Part 3 - Line 1
FUND RESEARCH TO BETTER UNDERSTAND SMITH-KINGSMORE SYNDROME AND FIND TREATMENTS TO IMPROVE PATIENT QUALITY OF LIFE AND, ULTIMATELY, A CURE. WITH A 3-YEAR, $600K CZI RARE AS ONE PROJECT GRANT, STRENGTHEN OUR ORGANIZATIONAL CAPACITY AND ALIGN PATIENTS AND RESEARCHERS.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THIS YEAR, SMITH-KINGSMORE SYNDROME FOUNDATION CONTINUED FUNDING CRITICAL RESEARCH AT THE UNIVERSITY OF CALIFORNIA-DAVIS IN THE LAB OF DR JOANNA CHIU, FOR A TOTAL INVESTMENT OF $68,154. THE RESEARCH CONCERNS HOW TO MOST EFFECTIVELY REPLICATE SKS PHENOTYPES IN ANIMAL MODELS (TO FURTHER FOUNDATIONAL RESEARCH INTO SKS) AND SCREENING ANIMAL MODELS WITH FDA-APPROVED DRUGS AS A PATH TO POSSIBLE TREATMENTS. THE FOUNDATION ALSO LAUNCHED A PROJECT TO DEVELOP CLINICAL PROTOCOLS FOR THE USE OF RAPAMYCIN AS A TREATMENT. THE FOUNDATION SIGNIFICANTLY EXPANDED ITS COMMUNITY AND RESEARCH NETWORK THROUGH TRANSLATING THE SKSF WEBSITE AND PATIENT/PROVIDER GUIDES INTO 23 LANGUAGES, HOSTING AN IN-PERSON INTERNATIONAL RESEARCH AND FAMILY CONFERENCE, AND PRESENTING AT MULTIPLE RESEARCH/CLINICIAN CONFERENCES.
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 |
|---|---|---|---|
Susan Dando Executive Director | Officer | 40 | $90,000 |
Kristen Groseclose Director Of Development | OfficerTrustee | 40 | $70,000 |
Matt Walsh Director | Trustee | 1 | $0 |
Cass Briggs Director | Trustee | 2 | $0 |
Dan Lepore Director | Trustee | 2 | $0 |
Eric Kelly Director | Trustee | 5 | $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 | $171,540 |
| Noncash contributions included in lines 1a–1f | $35,870 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $171,540 |
| Total Program Service Revenue | $0 |
| Investment income | $578 |
| 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 | $172,229 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $68,154 |
| 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. | $160,000 |
| Compensation of current officers, directors, key employees. | $8,942 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $1,050 |
| Other employee benefits | $565 |
| Payroll taxes | $12,663 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $2,314 |
| Fees for services: Accounting | $6,500 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $36,098 |
| Advertising and promotion | $0 |
| Office expenses | $3,916 |
| Information technology | $5,708 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $3,906 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $47,828 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $708 |
| All other expenses | $0 |
| Total functional expenses | $349,410 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $275,600 |
| Savings and temporary cash investments | $0 |
| 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 | $275,600 |
| Accounts payable and accrued expenses | $6,615 |
| 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 | $6,615 |
| Net assets without donor restrictions | $104,368 |
| Net assets with donor restrictions | $164,617 |
| 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 | $275,600 |
Grants Awarded
Over the last fiscal year, Smith-Kingsmore Syndrome Foundation has awarded $93,764 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF FLORIDA FOUNDATION PURPOSE: Research | $30,780 |
REGENTS OF UNIVERSITY OF CALIFORNIA PURPOSE: Research | $62,984 |