National Niemann-Pick Disease Foundation
- Assets
- $850.8k
- Revenue
- $499.2k
- Investments
- $0.0
- Employees
- 3
- Location
- Fort Atkinson, WI
- Founding
- 04/1993
- Data as of
- 12/2021
- 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 12/2021, 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 12/2021, National Niemann-Pick Disease Foundation generated $499.2k in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 3.1% each year. All expenses for the organization totaled $479.4k during the year ending 12/2021. While expenses have increased by 0.3% per year over the past 7 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
2021
Describe the Organization's Mission:
Part 3 - Line 1
SUPPORTING NIEMANN-PICK AFFECTED PATIENTS AND FAMILIES WITH 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 |
|---|---|---|---|
Joslyn Crowe Executive Director | Officer | 40 | $128,432 |
Justin Hopkin Chair | OfficerTrustee | 4 | $0 |
Becky Mcguire Vice Chair | OfficerTrustee | 2 | $0 |
Liz Heinze Secretary | OfficerTrustee | 1 | $0 |
Mike Smith Treasurer | OfficerTrustee | 1 | $0 |
Missy Ward Secretary (thru June) | OfficerTrustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $1,621 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $488,426 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $490,047 |
| Total Program Service Revenue | $3,400 |
| Investment income | $328 |
| 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 | $499,229 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $20,242 |
| Grants and other assistance to Foreign Orgs/Individuals | $12,179 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $134,567 |
| Compensation of current officers, directors, key employees. | $26,643 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $77,993 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $7,324 |
| Payroll taxes | $16,103 |
| Fees for services: Management | $11,591 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $25,874 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $70,032 |
| Advertising and promotion | $0 |
| Office expenses | $19,232 |
| Information technology | $30,752 |
| Royalties | $0 |
| Occupancy | $4,800 |
| Travel | $467 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $36,663 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $468 |
| Insurance | $5,710 |
| All other expenses | $5,391 |
| Total functional expenses | $479,388 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $578,166 |
| Savings and temporary cash investments | $232,055 |
| Pledges and grants receivable | $21,514 |
| 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 | $11,122 |
| Net Land, buildings, and equipment | $7,945 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $850,802 |
| Accounts payable and accrued expenses | $44,435 |
| Grants payable | $12,179 |
| 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 | $56,614 |
| Net assets without donor restrictions | $675,814 |
| Net assets with donor restrictions | $118,374 |
| 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 | $850,802 |
Grants Recieved
Over the last fiscal year, we have identified 6 grants that National Niemann-Pick Disease Foundation has recieved totaling $40,832.
| Awarding Organization | Amount |
|---|---|
Network For Good Inc Washington, DC PURPOSE: UNRESTRICTED | $19,763 |
Andrews Firefly Fund Austin, TX PURPOSE: PATIENT ACCESS PROGRAM | $10,000 |
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $5,956 |
Alan & Vicki Levine Family Foundation Inc Lighthouse Point, FL PURPOSE: SUPPORT AND ADVOCATE FAMILIES AFFECTED BY NIEMANN-PICK DISEASE | $2,000 |
Janus Foundation Denver, CO PURPOSE: MATCHING GIFTS | $1,648 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $1,465 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Stanley Manne Childrens Research Institute Chicago, IL | $169,123,650 | $39,027,696 |
Morgridge Institute Foundation Inc Madison, WI | $491,309,219 | $74,942,129 |
Area Ambulance Authority Cedar Rapids, IA | $10,871,659 | $8,115,144 |
Emily G Plumb Charitable Trust 02-40073 Chicago, IL | $40,196,560 | $2,064,076 |
Miles And Shirley Fiterman Endowment Fund Rochester, MN | $0 | $86,393 |
Allsup Charitable Services Inc Belleville, IL | $56,195 | $1,271,531 |
West Side Institute For Science And Education Chicago, IL | $0 | $965,979 |
Star Legacy Foundation Eden Prairie, MN | $1,266,259 | $739,217 |
International Clinical Cytometry Society Glenview, IL | $947,003 | $624,954 |
National Niemann-Pick Disease Foundation Fort Atkinson, WI | $850,802 | $499,229 |
American Board Of Medical Specialties Research & Education F Chicago, IL | $305,881 | $0 |
Design Industries Foundation Fighting Aids-Chicago Inc Chicago, IL | $1,326,624 | $272,741 |