Wiedemann-Steiner Syndrome Foundation
- Assets
- $860.3k
- Revenue
- $235.7k
- Investments
- $649.6k
- Employees
- 0
- Location
- Sacramento, CA
- Founding
- 06/2016
- Data as of
- 12/2023
- EIN
- 81-1260031
Organization Overview
Wiedemann-Steiner Syndrome Foundation is located in Sacramento, CA. The organization was established in 2016. According to its NTEE Classification (G11) the organization is classified as: Single Organization Support, 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. Wiedemann-Steiner 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, Wiedemann-Steiner Syndrome Foundation generated $235.7k in total revenue. This represents relatively stable growth, over the past 6 years the organization has increased revenue by an average of 2.3% each year. All expenses for the organization totaled $22.2k during the year ending 12/2023. While expenses have increased by 8.5% per year over the past 6 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.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
EDUCATE THOSE AFFECTED BY WIEDEMANN-STEINER SYNDROME, A RARE GENETIC CONDITION, AND TO SUPPORT AND ADVOCATE FOR ONGOING SCIENTIFIC RESEARCH.
Describe the Organization's Program Activity:
Part 3 - Line 4a
EXPANDED OUTREACH THROUGH ITS FAMILY VOLUNTEERS TO SERVE AS REGIONAL AMBASSADORS AND HOSTED SEVERAL VIRTUAL ACTIVITIES TO RAISE AWARENESS OF WSS INCLUDING THE MONTHLY EXPERT VIRTUAL DISCUSSIONS TO EDUCATE THE WSS COMMUNITY, ANNUAL WSS TRIATHLON (VIRTUALLY), AND INTERNATIONAL WSS AWARENESS DAY. ADDITIONALLY, FOUNDATION ORGANIZES AND SPONSORS A BI-ANNUAL CONFERENCE WITH EDUCATIONAL RESOURCES FOR OBSTACLES WSS FAMILIES FACE, AS WELL AS RESEARCH UPDATES.
BEGAN TO ORGANIZE THE INFRASTRUCTURE IN ORDER TO COMMISSION A NATURAL HISTORY STUDY TO SUPPORT THE COMPLETED RESEARCH FROM ACCOMPLISHMENT 3 ON PAGE 2, AS WELL AS A STUDY ON WSS CELL LINES AND MOLECULAR GENETICS RESEARCH.
RAISED AWARENESS AND SUPPORT TO INITIATE MEDICAL RESEARCH ON THE WSS GENE BY LEVERAGING THE EXISTING SCIENTIFIC ADVISORY BOARD AND NOMINATED A RARE GENETIC SCIENTIST TO INITIATE THE FOUNDATION'S FIRST STUDY OF WSS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Libby Woolford President | OfficerTrustee | 9 | $0 |
Thor Misko Secretary | OfficerTrustee | 5.1 | $0 |
Drew Schaefer Treasurer | OfficerTrustee | 5 | $0 |
Diego Mahecha Board Member | Trustee | 2 | $0 |
Kim Lagravinese Board Member | Trustee | 5 | $0 |
Christina O'keeffe Board Member | Trustee | 9 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $104,676 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $124,013 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $228,689 |
| Total Program Service Revenue | $0 |
| Investment income | $11,817 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | -$5,537 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $235,716 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $6,000 |
| 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 | $7,890 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $3,900 |
| Advertising and promotion | $122 |
| Office expenses | $287 |
| Information technology | $364 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $0 |
| 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 | $0 |
| Insurance | $1,295 |
| All other expenses | $0 |
| Total functional expenses | $22,177 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $160,300 |
| Savings and temporary cash investments | $1,007 |
| Pledges and grants receivable | $2,121 |
| 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 | $1,590 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $45,750 |
| Investments—other securities | $649,555 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $860,323 |
| 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 | $860,323 |
| 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 | $860,323 |