Civic Intelligence

National Niemann-Pick Disease

EIN 35-1844264 • 501(c)3 • Fort Atkinson, WI

Profile

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.

PO Box 49Fort Atkinson, WI 53538

www.nnpdf.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

57th percentile

0.03x

Higher debt load relative to assets than 57% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Liabilities / Revenue

57th percentile

0.03x

Higher debt load relative to revenue than 57% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Net Margin

65th percentile

13%

Higher net margin than 65% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Top Officer Pay

88th percentile

$108,839

Higher top officer pay than 88% of similar nonprofits.

Top officer pay equals 16.1% of source-year revenue.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Asset Growth

53rd percentile

4.4%

Faster asset growth than 53% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2023 to 2024

Revenue Growth

61st percentile

14%

Faster revenue growth than 61% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets57th percentile

Assets

Up

$607,164

Up $25,786 (+4.4%) from 2023

Liabilities

Down

$20,768

Down $61,098 (-75%) from 2023

Net Assets

Up

$586,396

Up $86,884 (+17%) from 2023

Operations
Liabilities / Revenue57th percentileNet Margin65th percentile

Revenue

Up

$676,224

Up $85,047 (+14%) from 2023

Expenses

Down

$589,340

Down $207,332 (-26%) from 2023

Net Income

Up

$86,884

Up $292,379 (+142%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth53rd percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$1.0M$500K$0Assets 2016: $436,134Liabilities 2016: $329,393Net Assets 2016: $106,7412016Assets 2017: $419,556Liabilities 2017: $175,369Net Assets 2017: $244,1872017Assets 2018: $548,210Liabilities 2018: $31,584Net Assets 2018: $516,6262018Assets 2019: $794,988Liabilities 2019: $20,502Net Assets 2019: $774,4862019Assets 2020: $799,194Liabilities 2020: $24,847Net Assets 2020: $774,3472020Assets 2021: $850,802Liabilities 2021: $56,614Net Assets 2021: $794,1882021Assets 2022: $698,723Liabilities 2022: $73,716Net Assets 2022: $625,0072022Assets 2023: $581,378Liabilities 2023: $81,866Net Assets 2023: $499,5122023Assets 2024: $607,164Liabilities 2024: $20,768Net Assets 2024: $586,3962024

Highlighted filing

2024

Assets$607,164
Liabilities$20,768
Net Assets$586,396
Open 2024 Filing

Operations Trend

Revenue Growth61st percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$1.0M$500K$0-$500KRevenue 2016: $326,537Expenses 2016: $476,271Net Income 2016: -$149,7342016Revenue 2017: $562,396Expenses 2017: $449,950Net Income 2017: $112,4462017Revenue 2018: $743,556Expenses 2018: $471,117Net Income 2018: $272,4392018Revenue 2019: $766,399Expenses 2019: $508,539Net Income 2019: $257,8602019Revenue 2020: $674,861Expenses 2020: $675,000Net Income 2020: -$1392020Revenue 2021: $499,229Expenses 2021: $479,388Net Income 2021: $19,8412021Revenue 2022: $556,671Expenses 2022: $725,852Net Income 2022: -$169,1812022Revenue 2023: $591,177Expenses 2023: $796,672Net Income 2023: -$205,4952023Revenue 2024: $676,224Expenses 2024: $589,340Net Income 2024: $86,8842024

Highlighted filing

2024

Revenue$676,224
Expenses$589,340
Net Income$86,884
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$607,164
Liabilities
$20,768
Net assets
$586,396
Revenue
$676,224
Expenses
$589,340
Net income
$86,884
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$6.07$0.21$5.86$6.76$5.89$0.87
2023Detailed filing. Detailed filing data is available for this year.$5.81$0.82$5.00$5.91$7.97$2.05
2022Detailed filing. Detailed filing data is available for this year.$6.99$0.74$6.25$5.57$7.26$1.69
2021Detailed filing. Detailed filing data is available for this year.$8.51$0.57$7.94$4.99$4.79$0.20
2020Detailed filing. Detailed filing data is available for this year.$7.99$0.25$7.74$6.75$6.75$0.00
2019Detailed filing. Detailed filing data is available for this year.$7.95$0.21$7.74$7.66$5.09$2.58
2018Detailed filing. Detailed filing data is available for this year.$5.48$0.32$5.17$7.44$4.71$2.72
2017Detailed filing. Detailed filing data is available for this year.$4.20$1.75$2.44$5.62$4.50$1.12
2016Detailed filing. Detailed filing data is available for this year.$4.36$3.29$1.07$3.27$4.76$1.50
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jun 10, 2025
Return Version
2024v5.1
Gross Receipts
$676,224
Mission and Program Overview

Mission

The national niemann-pick disease foundation is a non-profit 501(c)(3) organization that supports and promotes research to find a cure or treatments for all types of niemann-pick disease and provides support services to individuals and families affected by the disease.

To support and empower patients and families affected by niemann-pick disease through education, collaboration, and research.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$72,229$310,687▲ $238,458
Cash and Non-Interest-Bearing Accounts$468,386$270,741▼ $197,645
Pledges and Grants Receivable$12,563$21,606▲ $9,043
Prepaid Expenses and Deferred Charges$8,666$4,130▼ $4,536
Land, Buildings, and Equipment, Net$2,337$0▼ $2,337
Total Assets$581,378$607,164▲ $25,786
Other Assets Total$17,197$0▼ $17,197
Liabilities
Accounts Payable and Accrued Expenses$78,047$20,768▼ $57,279
Grants Payable$3,819$0▼ $3,819
Total Liabilities$81,866$20,768▼ $61,098
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$317,015$453,273▲ $136,258
Net Assets With Donor Restrictions$182,497$133,123▼ $49,374
Total Net Assets Fund Balance$499,512$586,396▲ $86,884
Total Liabilities and Net Assets / Fund Balance$581,378$607,164▲ $25,786

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$0$9,435$9,435
Other Land Buildings$0$8,413$8,413
Compensation and Service Providers
Top Officer Pay88th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Joslyn CroweExecutive Director Thru SeptemberFT$105,504$3,335$108,839

Board Members and Trustees

NameTitle
Elizabeth HeinzeChair
Becky McguireVice Chair
Anthony LeoniDirector
Chrystelle BougaultDirector
Dawn StitesDirector
Gail KoujaianDirector
Garland AlveyDirector
Kari LatoDirector
Kelly LeeDirector
Mary Frances HarmonDirector
Meghann FergusonDirector
Paul MerriganDirector
Travis ObermeyerDirector
Cara GilmoreDirector Thru June
Taylor SabkySecretary
Mike SmithTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$633,087
Program Service Revenue
$29,969
Investment Income
$6,468
Other Revenue
$6,700
All Other Contributions
$632,137
Change in Net Assets
$86,884

Audited Revenue Reconciliation

Revenue per Audited Statements
$676,224
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$3,925
Total Revenue per Audited Statements
$680,149
Total Revenue per Form 990
$676,224
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$340,807
Salaries, Compensation, and Employee Benefits$204,465
Grants and Similar Amounts Paid$44,068
Total Fundraising Expense$36,027
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Conferences and Meetings$200,532$1,653$126$202,311
Current Officers, Directors, Trustees, and Key Employees$67,159$18,098$8,810$94,067
Other Salaries and Wages$63,461$16,587$7,684$87,732
Grants to Domestic Individuals$43,910--$43,910
Fees for Services Accounting-$32,493-$32,493
Travel$25,816$4,725$53$30,594
Fees for Services Other$7,222$20,283$1,819$29,324
Office Expenses$2,733$1,455$11,517$15,705
Payroll Taxes$10,466$2,779$1,321$14,566
Information Technology$7,225$1,927$3,463$12,615
Other Employee Benefits$5,820$1,545$735$8,100
Other Expenses$5,000$689-$5,689
Insurance$3,258$869$411$4,538
All Other Expenses$248$3,933-$4,181
Depreciation Depletion-$2,337-$2,337
Occupancy$696$186$88$970
Foreign Grants$158--$158
Interest-$50-$50
Total Functional Expenses$443,704$109,609$36,027$589,340

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$593,265
Expenses per Audited Statements$589,340
Total Expenses per Form 990$589,340
Expenses Not Reported on Form 990$3,925
Expenses Not Reported on Financial Statements$0
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 8B

“The organization does not have any committees with authority to act on behalf of the governing body.”

Form 990, Part VI, Section B, Line 11B

“The prepared form 990 is reviewed and approved by the members of the governing body before the return is filed with the irs.”

Form 990, Part VI, Section B, Line 12C

“Annually all directors and officers complete and sign a statement that provides information regarding their interests and those of their family members that could give rise to conflicts. The members of the governing body make determinations of whether a conflict exists and review actual conflicts. Any person with a conflict is prohibited from participating in the governing body's deliberations and decisions in the transaction.”

Form 990, Part VI, Section B, Line 15A

“The independent members of the governing body annually conduct a performance review of the executive director and determine the executive director's compensation using data on compensation paid by comparable organizations for similar services. The members of the governing body approve the executive director's compensation with an official vote and discussions and results are documented in the minutes of the meetings of the governing body.”

Form 990, Part VI, Section C, Line 19

“The organization makes its governing documents, conflict of interest policy, and financial statements available to the public upon request.”

Filing and Contact Details

Filer

Filer Name
National Niemann-pick Disease
EIN
35-1844264
Phone
8772873672
Address
PO BOX 49, FORT ATKINSON, WI 53538

Signing Officer

Name
Elizabeth Heinze
Title
Chair
Phone
8772873672
Signed
2025-06-10
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Saira Sultan
Formed
1992
Legal Domicile
Wi
Voting Board Members
16
Independent Board Members
16
Employees
3
Volunteers
20

Preparer

Firm
Wegner Cpas Llp
Address
2921 LANDMARK PL STE 300, MADISON, WI 53713-4236
Preparer
Jason Stephens CPA
Phone
6082744020
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IRS990/MissionDesc0THE 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.
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IRS990/ProgSrvcAccomActy2Grp/Desc0RESEARCH 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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