Civic Intelligence

Prader-Willi Syndrome Association (USA)

EIN 41-1306908 • 501(c)3 • Brandon, FL

Profile

Advocate, educate and support individuals affected by prader-willi syndrome and their caregivers.

1032 E Brandon BlvdBrandon, FL 33511

www.pwsausa.org

Siviq Scores

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

Liabilities / Assets

68th percentile

0.21x

Higher debt load relative to assets than 68% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

81st percentile

0.49x

Higher debt load relative to revenue than 81% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

42nd percentile

1.2%

Higher net margin than 42% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

68th percentile

$102,259

Higher top officer pay than 68% of similar nonprofits.

Top officer pay equals 6.5% of source-year revenue.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Asset Growth

86th percentile

34%

Faster asset growth than 86% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

37th percentile

0.5%

Faster revenue growth than 37% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets68th percentile

Assets

Up

$3,678,825

Up $925,806 (+34%) from 2023

Liabilities

Up

$778,529

Up $724,133 (+1331%) from 2023

Net Assets

Up

$2,900,296

Up $201,673 (+7.5%) from 2023

Operations
Liabilities / Revenue81st percentileNet Margin42nd percentile

Revenue

Up

$1,585,370

Up $8,018 (+0.5%) from 2023

Expenses

Down

$1,567,125

Down $280,299 (-15%) from 2023

Net Income

Up

$18,245

Up $288,317 (+107%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth86th percentile

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

$4.0M$3.0M$2.0M$1.0M$0Assets 2010: $1,552,155Liabilities 2010: $47,462Net Assets 2010: $1,504,6932010Assets 2011: $1,537,043Liabilities 2011: $113,733Net Assets 2011: $1,423,3102011Assets 2012: $1,474,573Liabilities 2012: $71,275Net Assets 2012: $1,403,2982012Assets 2013: $1,375,285Liabilities 2013: $109,211Net Assets 2013: $1,266,0742013Assets 2014: $1,512,024Liabilities 2014: $99,130Net Assets 2014: $1,412,8942014Assets 2015: $1,980,049Liabilities 2015: $240,473Net Assets 2015: $1,739,5762015Assets 2016: $2,434,992Liabilities 2016: $71,811Net Assets 2016: $2,363,1812016Assets 2017: $2,074,188Liabilities 2017: $306,014Net Assets 2017: $1,768,1742017Assets 2018: $1,829,880Liabilities 2018: $170,586Net Assets 2018: $1,659,2942018Assets 2019: $2,200,383Liabilities 2019: $579,542Net Assets 2019: $1,620,8412019Assets 2020: $1,920,086Liabilities 2020: $107,681Net Assets 2020: $1,812,4052020Assets 2021: $2,440,137Liabilities 2021: $53,581Net Assets 2021: $2,386,5562021Assets 2022: $2,880,192Liabilities 2022: $112,201Net Assets 2022: $2,767,9912022Assets 2023: $2,753,019Liabilities 2023: $54,396Net Assets 2023: $2,698,6232023Assets 2024: $3,678,825Liabilities 2024: $778,529Net Assets 2024: $2,900,2962024

Highlighted filing

2024

Assets$3,678,825
Liabilities$778,529
Net Assets$2,900,296
Open 2024 Filing

Operations Trend

Revenue Growth37th percentile

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

$3.0M$2.0M$1.0M$0-$1.0MExpenses 2010: $1,066,4302010Expenses 2011: $1,295,2462011Expenses 2012: $1,084,4822012Revenue 2013: $1,209,510Expenses 2013: $1,440,266Net Income 2013: -$230,7562013Revenue 2014: $1,358,953Expenses 2014: $1,208,873Net Income 2014: $150,0802014Revenue 2015: $1,844,062Expenses 2015: $1,454,509Net Income 2015: $389,5532015Revenue 2016: $2,069,104Expenses 2016: $1,443,614Net Income 2016: $625,4902016Revenue 2017: $1,379,822Expenses 2017: $2,018,842Net Income 2017: -$639,0202017Revenue 2018: $1,261,658Expenses 2018: $1,223,962Net Income 2018: $37,6962018Revenue 2019: $1,498,022Expenses 2019: $1,730,503Net Income 2019: -$232,4812019Revenue 2020: $1,219,448Expenses 2020: $1,200,266Net Income 2020: $19,1822020Revenue 2021: $1,719,245Expenses 2021: $1,238,362Net Income 2021: $480,8832021Revenue 2022: $2,242,320Expenses 2022: $1,555,709Net Income 2022: $686,6112022Revenue 2023: $1,577,352Expenses 2023: $1,847,424Net Income 2023: -$270,0722023Revenue 2024: $1,585,370Expenses 2024: $1,567,125Net Income 2024: $18,2452024

Highlighted filing

2024

Revenue$1,585,370
Expenses$1,567,125
Net Income$18,245
Open 2024 Filing

Filings

Most recent year

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

Open filing
Assets
$3,678,825
Liabilities
$778,529
Net assets
$2,900,296
Revenue
$1,585,370
Expenses
$1,567,125
Net income
$18,245
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$3.68$0.78$2.90$1.59$1.57$0.02
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.75$0.05$2.70$1.58$1.85$0.27
2022Detailed filing. Detailed filing data is available for this year.$2.88$0.11$2.77$2.24$1.56$0.69
2021Detailed filing. Detailed filing data is available for this year.$2.44$0.05$2.39$1.72$1.24$0.48
2020Detailed filing. Detailed filing data is available for this year.$1.92$0.11$1.81$1.22$1.20$0.02
2019Detailed filing. Detailed filing data is available for this year.$2.20$0.58$1.62$1.50$1.73$0.23
2018Detailed filing. Detailed filing data is available for this year.$1.83$0.17$1.66$1.26$1.22$0.04
2017Detailed filing. Detailed filing data is available for this year.$2.07$0.31$1.77$1.38$2.02$0.64
2016Detailed filing. Detailed filing data is available for this year.$2.43$0.07$2.36$2.07$1.44$0.63
2015Detailed filing. Detailed filing data is available for this year.$1.98$0.24$1.74$1.84$1.45$0.39
2014Detailed filing. Detailed filing data is available for this year.$1.51$0.10$1.41$1.36$1.21$0.15
2013Detailed filing. Detailed filing data is available for this year.$1.38$0.11$1.27$1.21$1.44$0.23
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.47$0.07$1.40$1.08
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.54$0.11$1.42$1.30
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.55$0.05$1.50$1.07
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jun 9, 2025
Return Version
2024v5.1
Gross Receipts
$1,612,933
Mission and Program Overview

Mission

Advocate, educate and support individuals affected by prader-willi syndrome and their caregivers.

To enchance the quality of life and empower those affected by prader-willi syndrome

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,231,348$1,283,042▲ $51,694
Accounts Receivable$7,108$628,494▲ $621,386
Cash and Non-Interest-Bearing Accounts$198,045$303,910▲ $105,865
Prepaid Expenses and Deferred Charges$88,416$163,927▲ $75,511
Land, Buildings, and Equipment, Net$14,321$6,633▼ $7,688
Total Assets$2,753,019$3,678,825▲ $925,806
Other Assets Total$1,213,781$1,292,819▲ $79,038
Liabilities
Deferred Revenue-$692,407-
Accounts Payable and Accrued Expenses$54,396$86,122▲ $31,726
Total Liabilities$54,396$778,529▲ $724,133
Net Assets / Fund Balance
Net Assets With Donor Restrictions$1,609,758$1,661,101▲ $51,343
Net Assets Without Donor Restrictions$1,088,865$1,239,195▲ $150,330
Total Net Assets Fund Balance$2,698,623$2,900,296▲ $201,673
Total Liabilities and Net Assets / Fund Balance$2,753,019$3,678,825▲ $925,806

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$0$18,469-
Equipment$6,633$27,059-
Other Assets Org$544,642--

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2024$578,707$1,005▲ $53,757-$633,469
2023$511,657$2,192▲ $80,483$15,625$578,707
2022$615,607$2,825▼ $92,141$14,634$511,657
2021$542,049$3,126▲ $70,432-$615,607
2020$472,337$1,870▲ $74,506$6,664$542,049
Compensation and Service Providers
Top Officer Pay68th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Stacy WardChief Executive OfficerFT$102,259$102,259

Board Members and Trustees

NameTitle
Marguerite RupnowChair
Mitch CohenVice Chair
Ann ScheimannDirector
Clint HurdleDirector
Jeff CovingtonDirector
John LensDirector
Kathryn LuceroDirector
Lisa LambDirector
Matt MccleeryDirector
Michelle TolbertDirector
Tim HearnDirector
Denise ServaisSecretary
Tina ThlenfeldTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,446,508
Program Service Revenue
$77,353
Investment Income
$61,509
Other Revenue
$0
All Other Contributions
$1,149,094
Change in Net Assets
$18,245

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,577,618
Revenue Not Reported on Financial Statements
$7,752
Revenue Not Reported on Form 990
$443,205
Total Revenue per Audited Statements
$2,020,823
Total Revenue per Form 990
$1,585,370
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$887,805
Other Expenses$666,415
Total Fundraising Expense$147,693
Grants and Similar Amounts Paid$12,905
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$613,589$41,879$22,766$678,234
All Other Expenses$69,401$25,197$26,792$121,390
Other Expenses$107,933$0$2,121$110,054
Travel$102,130$24$3,701$105,855
Current Officers, Directors, Trustees, and Key Employees$61,356$20,451$20,452$102,259
Information Technology$58,895$8,480$5,732$73,107
Payroll Taxes$22,464$23,815$11,147$57,426
Other Employee Benefits$20,094$16,080$7,376$43,550
Conferences and Meetings$5,915$35,155$512$41,582
Payments to Affiliates$849$27,000$0$27,849
Fees for Services Other$97$16$15,802$15,915
Fees for Services Accounting$0$13,400$0$13,400
Grants to Domestic Individuals$12,905--$12,905
Depreciation Depletion$7,513$1,140$622$9,275
Fees for Service Investment Mgmnt Fees$0$7,752$0$7,752
Pension Plan Contributions$1,726$4,610$0$6,336
Insurance$3,482$553$301$4,336
Advertising$2,766$38$20$2,824
Total Functional Expenses$1,157,725$261,707$147,693$1,567,125

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$1,819,148
Total Expenses per Form 990$1,567,125
Expenses per Audited Statements$1,559,373
Expenses Not Reported on Form 990$259,775
Expenses Not Reported on Financial Statements$7,752
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$0
Fundraising Gross Income$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Hotstove$236,850$0-$0
General Fundraisers$60,564$0-$0
Total Events$297,414$0-$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
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
No
Backup withholding compliance
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
Filing and Contact Details

Filer

Filer Name
PRADER-WIllI SYNDROME ASSOCIATION (USA)
EIN
41-1306908
Phone
9413120400
Address
1032 E BRANDON BLVD, BRANDON, FL 33511

Signing Officer

Name
Stacy Ward
Title
Chief Executive Officer
Phone
9413120400
Signed
2025-06-09
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Stacy Ward
Formed
1977
Legal Domicile
Fl
Voting Board Members
13
Independent Board Members
13
Employees
17
Volunteers
350

Preparer

Firm
Awp Accounting
Address
393 BROADLEAF, ROCHESTER, MI 48306
Preparer
Amy L Maust
Phone
5862466412
Supplemental Narrative

Additional Explanations

Pt VI, Line 11B

“The executive director and treasurer reviewed and approved the irs form 990.”

Pt VI, Line 12C

“Enforcement of conflicts of interest policy - officers, directors, and key employees sign a conflict of interest form each year at the fall board meeting”

Pt VI, Line 15A

“Compensation process for the top officials - the policy for determining compensation of the pwsa executive director includes the elements of 1) review and approval by the executive committee of board of directors, 2) use of data of comparable compensation, and 30 comtemporaneous documentation and recordkeeping.”

Pt VI, Line 19

“Governing documents disclosure explanation - the association when requested will provide its goberning documents, conflivt of interest policy, and financial statements available to the requesting public.”

Pt XI

“CHANGE IN VALUE OF TRUST”

Pt XII, Line 2C

“The process has not changed from the prior year.”

Financial Statement Notes

Pt X, Line 2

“Management has evaluated the effect of an accounting standard relating to accounting for uncertainty in income taxes. Management has determined that the association had no uncertain income tax positions that could have a significant effect on the financial statements for the year ended december 31, 2024. The associations federal income tax returns are subject to examination by the internal revenue service, generallly for three years after the federal income tax returns were filed.”

Pt XI, Line 2D

“Change in value of trust $73,359”

Raw XML AppendixShowing 400 of 689 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
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IRS990/ActivityOrMissionDesc0TO ENCHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME
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IRS990/BooksInCareOfDetail/PhoneNum09414876731
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IRS990/Desc0FAMILY SUPPORT: PWSA/USAS FAMILY SUPPORT TEAM PROVIDES INDIVIDUALS DIAGNOSED WITH PRADER-WILLI SYNDROME, THEIR FAMILIERS, AND CARE PROVIDERS WITH CRITICAL INFORMATION AND RESOURCES ON PWS. WE ALSO PROVIDE EDUCATION TO MEDICAL PROVIDERS, SCHOOLS, AND PROFESSIONAL CARE GIVERS THROUGH ONGOING TRAINING, TOOLKITS AND OTHER VALUABLE RESOURCES. WE SUPPORT THE FAMILY FROM NICU THROUGH ALL STAGES OF THE PWS JOURNEY. IN 2024, PWSAS FAMILY SUPPORT TEAM RESPONDED TO 4,043 FAMILY SUPPORT INQUIRES PROVIDING SUPPORT TO FAMILIES IN ALL 50 U.S. STATES AND 20 COUNTRIES. IN 2024, THERE WERE 24 TRAININGS TO HOSPITALS, SCHOOLS, LAW ENFORCEMENT AND RESIDENTIAL GROUP HOMES. WE HOSTED OUR FIRST EVER RESIDENTAL PROVIDERS CONFERENCE TO PROVIDE LECTURES/WORKSHOPS TO MORE THAN 100 PROFESSIONALS AROUND THE COUNTRY. THROUGH GENEROUS DONATIONS WE ASSEMBLED AND MAILED NEW DIAGNOSIS KITS AND CARE PAGES WITH PACKET OF HOPE RESOURCE GUIDE FOR NEW PWS FAMILIES. IN ADDITION, WE HAVE FREE FAMILY SUPPORT WEBINAR SERIES FOR FAMILIES AND PROVIDERS.
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IRS990/ProgSrvcAccomActy2Grp/Desc0ADVOCACY AND AWARENESS: INCREASING AWARENESS AND EFFECTIVELY ADVOCATING FOR PRADER-WILLI SYNDROME AT THE STATE AND FEDERAL LEVEL IS A CRITICAL COMPONENT OF OUR MISSION. WE SEEK TO INVOLVE ALL MEMBERS OF OUR COMMUNITY AND WORK TO KEEP YOU INFORMED ON THE BEST WAYS TO AFFECT CHANGE FOR OUR LOVED ONES. IN 2024, PWSA CONDUCTED A DC FLY-IN DRAWING 147 ADVOCATES REPRESENTING 31 STATES. ADVOCATES ATTENDED A REMARKABLE 131 CONGRESSIONAL MEETINGS TO ENGAGE IN DISCUSSION AND BE A VOICE FOR THOSE AFFECTED BY PRADER-WILLI SYNDROME.
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IRS990/ProgSrvcAccomActy3Grp/Desc0RESEARCH: PWSA/USA SEEKS TO SUPPORT RESEARCH PROJECTS WITH THE POTENTIAL FOR IMMEDIATE AND HIGH IMPACT FOR THE PWS COMMUNITY. THE GOAL IS TO FAST-TRACK BETTER TREATMENT FOR THE SYNDROME, AND WE PROUDLY COLLABORATE WITH PARTNERS REPRESENTING PHARMACEUTICAL COMPANIES, RESEARCH UNIVERSITIES, AND MORE TO ACHIEVE THAT GOAL. PWSA USAS CLINICAL AND SCIENTIFIC ADVISORY BOARD (CSAB) DEDICATE THOUSANDS OF HOURS TO ENHANCE RESEARCH, WRITE EDUCATIONAL MATERIALS AND PROVIDE CONSULTATION TO UNDERSTANDING AND TREATING PWS. IN 2024, MULTIPLE PHASE 3 TRIALS BEGAN TO BRING NEW HOPE TO THE COMMUNITY. SEVERAL YEARS OF ADVOCACY AND RESEARCH EFFORTS HELPED PAVE WAY TO THE FIRST FDA APPROVED TREATMENT FOR HYPERPHAGIA.
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