National Niemann-pick Disease Foundation Inc
Nonprofit profile at a glance
- EIN
- 351844264
- IRS 990 coverage
- 2016–2025
- Forms available
- Form 990 2025
- Location
- Fort Atkinson, WI, USA
- Phone
- 8772873672
- Rating
- 75
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Single Organization Support
Reported finances
- Revenue
- $929,337
- Expenses
- $553,122
- Assets
- $981,265
- Liabilities
- $18,654
Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
17 people listed
Executive titles in this filing
- SAIRA SULTAN (EXECUTIVE DIRECTOR (THRU JUNE))
- SHANTE ANTROM (INTERIM EXECUTIVE DIRECTOR (FROM NOVEMBER))
Highest reported compensation
- SHANTE ANTROM (INTERIM EXECUTIVE DIRECTOR (FROM NOVEMBER)): $27,518 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
The national niemann-pick disease foundation, inc. (nnpdf) is a non-profit, patient advocacy and family support organization dedicated to supporting and empowering patients and families affected by niemann-pick disease, through education, collaboration and research.
What it reported doing in 2025
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.
Operating model
- Revenue model
- Donor-supported. 95% of the money available for current operations came from contributions and gifts.
- Distribution model
- Direct operator. The filing allocates 87% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and reported officer compensation is a large share of total spending, which may reflect staffing concentration.
Rating breakdown
- Financial Efficiency: 55
- Transparency & Controls: 80
- Accountability: 100
- Sustainability: 71
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 43.6%; rating input score 44
- Program expense ratio: 71.4%; rating input score 71
- Fundraising efficiency: $31.26 raised per $1 spent on fundraising; rating input score 66; 66th percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
- Pay-setting controls: Limited
- Foreign activity oversight: 2 of 8 controls in place; rating input score 25
- Claims monitoring procedures: Pass
- Requires narrative reports: Limited
- Conducts field audits: Limited
- May suspend future funding: Limited
- Requires financial reports: Limited
- Conducts site visits: Limited
- Requires grant agreements: Pass
- May require repayment: Limited
- Grant itemization coverage: 100%; rating input score 100; 78th percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
- Governance controls: 8 of 8 controls in place; rating input score 100
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: Pass
- Other executive compensation review process: NotApplicable
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass
Sustainability
- Operating margin: 40.5%; rating input score 87; 87th percentile among comparable filings
- Total-asset coverage ratio: 1.77; rating input score 61; 61st percentile among comparable filings
- Liabilities to assets ratio: 0.02; rating input score 54; 54th percentile among comparable filings
- Officer compensation ratio: 5%; rating input score 50; 50th percentile among comparable filings
Growth
- Program expense growth: 6.8% per year; rating input score 100; 45th percentile among comparable filings
- Revenue growth: 4.5% per year; rating input score 100; 34th percentile among comparable filings
- Asset growth: 5.5% per year; rating input score 100; 38th percentile among comparable filings
Details
- Where the money goes: 43.6% of revenue deployed · 71.4% of spending went to programs
- Governance: 11 of 11 board members independent · 8 of 8 filing controls reported
- Programs: 2 filed program accomplishments · $395K in reported program spending
- Leadership: top reported pay $28K · 17 people listed
- Consistency: 33 of 33 current checks pass
- Schedules: 6 filed schedules · includes major donors, foreign activity, and grants
- Filing history: 10 filing years from 2016 to 2025
- Contacts: How to reach this organization
- Money network: 1 filed money-flow record
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- Moderate — Financial Efficiency: Mission deployment rate scored 44/100.
- Review — Sustainability: Officer compensation ratio scored 50/100.
- Review — Sustainability: Liabilities to assets ratio scored 54/100.