National Niemann-Pick Disease Foundation
- Assets
- $581.4k
- Revenue
- $591.2k
- Investments
- $0.0
- Employees
- 3
- Location
- Fort Atkinson, WI
- Founding
- 04/1993
- Data as of
- 12/2023
- EIN
- 35-1844264
Organization Overview
National Niemann-Pick Disease Foundation is located in Fort Atkinson, WI. The organization was established in 1993. According to its NTEE Classification (H11) the organization is classified as: Single Organization Support, under the broad grouping of Medical Research and related organizations. As of 12/2023, National Niemann-Pick Disease Foundation employed 3 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Niemann-Pick Disease 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, National Niemann-Pick Disease Foundation generated $591.2k in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 7.7% each year. All expenses for the organization totaled $796.7k during the year ending 12/2023. While expenses have increased by 6.6% per year over the past 8 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
TO SUPPORT AND EMPOWER PATIENTS AND FAMILIES AFFECTED BY NIEMANN-PICK DISEASE THROUGH EDUCATION, COLLABORATION, AND RESEARCH.
Describe the Organization's Program Activity:
Part 3 - Line 4a
FAMILY SUPPORT - SUPPORT SERVICES TO FAMILIES WHO HAVE A FAMILY MEMBER DIAGNOSED WITH NIEMANN-PICK DISEASE AND PATIENT ADVOCACY EFFORTS. PATIENT ADVOCACY FOR ACCESS TO MEDICATIONS AND EXPERIMENTAL THERAPIES. EMOTIONAL SUPPORT TO INDIVIDUALS AND FAMILIES DEALING WITH ALL TYPES OF NIEMANN-PICK DISEASE, ASSISTANCE THROUGH CRISES, INFORMATION AND IDEAS ABOUT ISSUES SUCH AS DOCTORS, CLINICS, INSURANCE COMPANIES AND OTHER HEALTH AND HUMAN SERVICE PROGRAMS AND PRACTICAL SUGGESTIONS ABOUT DAY-TO-DAY CARE. COMMUNICATIONS INCLUDING MONTHLY NEWSLETTERS, E-NEWS, AND SOCIAL MEDIA NEWS UPDATES. THE ANNUAL NNPDF FAMILY SUPPORT AND MEDICAL CONFERENCE BRINGS TOGETHER FAMILIES, SCIENTISTS, AND MEDICAL PROFESSIONALS TO SHARE INFORMATION AND PROVIDE SUPPORT.
RESEARCH SUPPORT - NNPDF SUPPORTS OVER 450 DIAGNOSED FAMILIES AT ALL STAGES OF THEIR NIEMANN-PICK DISEASE JOURNEY. WE PROVIDE ACCURATE UP-TO-DATE INFORMATION ON THE LATEST ADVANCES IN MEDICINE AND SCIENCE RELATED TO NIEMANN-PICK DISEASE. PROVISION AND MONITORING OF SCIENTIFIC RESEARCH GRANTS AND FELLOWSHIPS TO RESEARCH SCIENTISTS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Becky Mcguire Chair | OfficerTrustee | 2 | $0 |
Elizabeth Heinze Vice Chair | OfficerTrustee | 1 | $0 |
Meghann Ferguson Director | Trustee | 1 | $0 |
Mike Smith Treasurer | OfficerTrustee | 1 | $0 |
Mary Frances Harmon Director | Trustee | 1 | $0 |
Chrystelle Bougault Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $882 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $551,934 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $552,816 |
| Total Program Service Revenue | $26,030 |
| Investment income | $4,934 |
| 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 | $591,177 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $22,803 |
| Grants and other assistance to domestic individuals. | $46,094 |
| Grants and other assistance to Foreign Orgs/Individuals | $39,525 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $135,068 |
| Compensation of current officers, directors, key employees. | $32,587 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $91,664 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $8,359 |
| Payroll taxes | $16,985 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $27,889 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $118,533 |
| Advertising and promotion | $0 |
| Office expenses | $24,657 |
| Information technology | $15,653 |
| Royalties | $0 |
| Occupancy | $840 |
| Travel | $30,576 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $189,447 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $2,804 |
| Insurance | $6,312 |
| All other expenses | $8,613 |
| Total functional expenses | $796,672 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $468,386 |
| Savings and temporary cash investments | $72,229 |
| Pledges and grants receivable | $12,563 |
| 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 | $8,666 |
| Net Land, buildings, and equipment | $2,337 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $17,197 |
| Total assets | $581,378 |
| Accounts payable and accrued expenses | $78,047 |
| Grants payable | $3,819 |
| 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 | $81,866 |
| Net assets without donor restrictions | $317,015 |
| Net assets with donor restrictions | $182,497 |
| 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 | $581,378 |