PRADER-WILLI SYNDROME ASSOCIATION (USA)

EIN: 411306908 501(c)(3)

BRANDON, FL

Total Revenue
$3,014,155
Total Expenses
$2,681,770
Total Assets
$3,636,718
Net Assets
$3,488,510
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Financial Trends

Organization Details

Formation Year
1977
Legal Domicile
FL
Principal Officer
STACY WARD
Phone
9413120400
Tax Period
2025-01-01 to 2025-12-31

PRADER-WILLI SYNDROME ASSOCIATION (USA), founded in 1977, is a community nonprofit that reported $3.0M in total revenue in fiscal year 2025. Revenue surged 90% from the prior year, signaling strong growth momentum. Expenses of $2.7M left a modest 11% surplus.

Mission

TO ENHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME.

Program Service Accomplishments

Program 1
Expenses: $858,901 Revenue: $749,554

FAMILY SUPPORT: PWSA/USA'S FAMILY SUPPORT TEAM PROVIDES INDIVIDUALS DIAGNOSED WITH PRADER-WILLI SYNDROME, THEIR FAMILIES, AND CARE PROVIDERS WITH CRITICAL INFORMATION AND RESOURCES ON PWS. WE ALSO...

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FAMILY SUPPORT: PWSA/USA'S FAMILY SUPPORT TEAM PROVIDES INDIVIDUALS DIAGNOSED WITH PRADER-WILLI SYNDROME, THEIR FAMILIES, 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 2025, PWSA'S FAMILY SUPPORT TEAM RESPONDED TO 4,567 FAMILY SUPPORT INQUIRIES PROVIDING SUPPORT TO FAMILIES IN ALL 50 U.S. STATES AND MORE THAN 20 DIFFERENT COUNTRIES.

Program 2
Expenses: $363,560 Revenue: $298,208

ADVOCACY 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...

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ADVOCACY 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.

Program 3
Expenses: $138,166 Revenue: $23,200

RESEARCH: 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...

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RESEARCH: 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. IN 2025, PWSA PAID OUT RESEARCH AND HEALTHCARE DEVELOPMENTS GRANTS TOTALING $50,000 AND RECEIVED THE FINDINGS FROM 2 OF OUR GRANT FUNDED PROJECTS.

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2025)

Revenue Breakdown

Contributions & Grants $2,666,053
Program Service Revenue $471,288
Investment Income $71,330
Other Revenue $-194,516
TOTAL REVENUE $3,014,155

Expense Breakdown

Grants Paid $50,000
Salaries & Benefits $1,076,507
Fundraising Expenses $257,731
Program Expenses $2,220,552
Other Expenses $1,555,263
TOTAL EXPENSES $2,681,770

Year-over-Year Comparison

2025 2024 Change
Revenue $3,014,155 $1,585,370 +0.9%
Expenses $2,681,770 $1,567,125 +0.7%
Net Income $332,385 $18,245 +17.2%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
15
Independent Members
15
Employees
16
Volunteers
N/A

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
4
$134,856
Total Directors
13
$0
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
MARGUERITE RUPNOW CHAIRMAN OF THE BOARD 3.00
Officer Director
$0 $0 $0
TINA IHENFELD TREASURER 5.00
Officer Director
$0 $0 $0
DENISE SERVAIS SECRETARY 3.00
Officer Director
$0 $0 $0
JEFFREY COVINGTON DIRECTOR 3.00
Director
$0 $0 $0
KATHRYN LUCERO DIRECTOR 3.00
Director
$0 $0 $0
ANN SCHEIMANN DIRECTOR 3.00
Director
$0 $0 $0
TIM HEARN DIRECTOR 3.00
Director
$0 $0 $0
CLINT HURDLE DIRECTOR 3.00
Director
$0 $0 $0
JOHN LENS DIRECTOR 3.00
Director
$0 $0 $0
MICHELLE TORBERT DIRECTOR 3.00
Director
$0 $0 $0
LISA LAMB DIRECTOR 3.00
Director
$0 $0 $0
MITCH COHEN DIRECTOR 3.00
Director
$0 $0 $0
MATT MCCLEERY DIRECTOR 3.00
Director
$0 $0 $0
STACY WARD CEO 40.00
Officer
$134,856 $0 $134,856
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $3,014,155 $2,681,770 $3,636,718 $332,385
2024 $1,585,370 $1,567,125 $3,678,825 $18,245
2023 $1,577,352 $1,847,424 $2,753,019 $-270,072
2022 $2,242,320 $1,555,709 $2,880,192 $686,611
2021 $1,719,245 $1,238,362 $2,440,137 $480,883
2020 $1,219,448 $1,200,266 $1,920,086 $19,182
2019 $1,498,022 $1,730,503 $2,200,383 $-232,481
2018 $1,261,658 $1,223,962 $1,829,880 $37,696
2017 $1,379,822 $2,018,842 $2,074,188 $-639,020
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