Nonprofit · EIN 41-1306908
PRADER-WILLI SYNDROME ASSOCIATION
Tax-exempt · BRANDON, FL 33511
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $3,014,155 | $2,681,770 | $332,385 | $3,636,718 | $148,208 | $3,488,510 |
| December 31, 2024 | 990 | $1,585,370 | $1,567,125 | $18,245 | $3,678,825 | $778,529 | $2,900,296 |
| December 31, 2023 | 990 | $1,577,352 | $1,847,424 | -$270,072 | $2,753,019 | $54,396 | $2,698,623 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $2,666,053
- Program service revenue
- $471,288
- Investment income
- $71,330
- Net income from fundraising events
- -$272,946
- Other revenue
- -$194,516
Expenses
- Grants and similar amounts paid
- $50,000
- Other salaries and wages
- $835,004
- Salaries, compensation and benefits (total)
- $1,076,507
- Professional fundraising fees
- $0
- Occupancy
- $11,916
- Travel
- $112,087
- Depreciation
- $3,418
- Program services (functional)
- $2,220,552
- Management and general (functional)
- $203,487
- Fundraising (functional)
- $257,731
Balance sheet and other
- Total assets, start of year
- $3,678,825
- Total assets, end of year
- $3,636,718
- Total liabilities, end of year
- $148,208
- Net assets, end of year
- $3,488,510
- Land, buildings and equipment
- $8,547
- Publicly traded securities
- $2,017,901
- Net assets without donor restrictions
- $2,159,672
- Net assets with donor restrictions
- $1,328,838
- Gross receipts
- $3,287,101
- Employees
- 16
- Volunteers
- 0
- Year formed
- 1977
- State of legal domicile
- FL
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| STACY WARD | CEO Officer | 40 | $134,856 |
| MARGUERITE RUPNOW | CHAIRMAN OF THE BOARD Trustee or director, Officer | 3 | $0 |
| TINA IHENFELD | TREASURER Trustee or director, Officer | 5 | $0 |
| DENISE SERVAIS | SECRETARY Trustee or director, Officer | 3 | $0 |
| JEFFREY COVINGTON | DIRECTOR Trustee or director | 3 | $0 |
| KATHRYN LUCERO | DIRECTOR Trustee or director | 3 | $0 |
| ANN SCHEIMANN | DIRECTOR Trustee or director | 3 | $0 |
| TIM HEARN | DIRECTOR Trustee or director | 3 | $0 |
| CLINT HURDLE | DIRECTOR Trustee or director | 3 | $0 |
| JOHN LENS | DIRECTOR Trustee or director | 3 | $0 |
| MICHELLE TORBERT | DIRECTOR Trustee or director | 3 | $0 |
| LISA LAMB | DIRECTOR Trustee or director | 3 | $0 |
| MITCH COHEN | DIRECTOR Trustee or director | 3 | $0 |
| MATT MCCLEERY | DIRECTOR Trustee or director | 3 | $0 |
990 for the year ended December 31, 2024: 14 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| STACY WARD | CHIEF EXECUTIVE OFFICER Officer | 50 | $102,259 |
| MARGUERITE RUPNOW | CHAIR Trustee or director, Officer | 5 | $0 |
| MITCH COHEN | VICE CHAIR Trustee or director | 3 | $0 |
| DENISE SERVAIS | SECRETARY Trustee or director | 3 | $0 |
| TINA THLENFELD | TREASURER Trustee or director | 3 | $0 |
| TIM HEARN | DIRECTOR Trustee or director | 3 | $0 |
| JOHN LENS | DIRECTOR Trustee or director | 3 | $0 |
| MICHELLE TOLBERT | DIRECTOR Trustee or director | 3 | $0 |
| MATT MCCLEERY | DIRECTOR Trustee or director | 3 | $0 |
| KATHRYN LUCERO | DIRECTOR Trustee or director | 3 | $0 |
| LISA LAMB | DIRECTOR Trustee or director | 3 | $0 |
| JEFF COVINGTON | DIRECTOR Trustee or director | 3 | $0 |
| ANN SCHEIMANN | DIRECTOR Trustee or director | 3 | $0 |
| CLINT HURDLE | DIRECTOR Trustee or director | 3 | $0 |
990 for the year ended December 31, 2023: 15 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| PAIGE RIVARDRESIGNED 7-28-23 | EXECUTIVE DIRECTOR Officer | 40 | $110,878 | $3,429 |
| STACY WARD | INTERIM EXECUTIVE DIRECTOR Trustee or director, Officer | 40 | $81,321 | $3,297 |
| JEFFREY COVINGTON | DIRECTOR Trustee or director | 3 | $0 | $0 |
| LISA LAMB | DIRECTOR Trustee or director | 3 | $0 | $0 |
| CLINT HURDLE | DIRECTOR Trustee or director | 3 | $0 | $0 |
| MITCHELL COHEN | VICE CHAIR Trustee or director | 3 | $0 | $0 |
| JOHN LENS | DIRECTOR Trustee or director | 3 | $0 | $0 |
| KATHRYN LUCERO | DIRECTOR Trustee or director | 3 | $0 | $0 |
| TAMMIE PENTA | DIRECTOR Trustee or director | 3 | $0 | $0 |
| MARGUERITE RUPNOW | CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| TIM HEARN | DIRECTOR Trustee or director | 3 | $0 | $0 |
| MATT MCCLEERY | DIRECTOR Trustee or director | 3 | $0 | $0 |
| DENISE SERVAIS | SECRETARY Trustee or director | 3 | $0 | $0 |
| MICHELLE TORBERT | DIRECTOR Trustee or director | 3 | $0 | $0 |
| ANN SCHEIMANN | DIRECTOR Trustee or director | 3 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 1032 E BRANDON BLVD 4744, BRANDON, FL 33511-5509
- In care of
- % DEBI APPLEBEE
- Principal officer (990 for 2025)
- STACY WARD, 1032 E BRANDON BLVD 4744 4744, BRANDON, FL 33511
- Signed the 990
- STACY WARD, CEO
- Phone
- (941) 312-0400
- Website
- WWW.PWSAUSA.ORG
- Return prepared by
- CAVANAUGH & CO LLP
Mission
TO ENHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME.
Program accomplishments
- 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.Expenses $858,901 · revenue $749,554
- 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.Expenses $363,560 · revenue $298,208
- 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.Expenses $138,166 · grants $50,000 · revenue $23,200
- NATIONAL CONVENTION AND MISCELLANEOUSExpenses $859,925 · revenue $1,047,634
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 41-1306908
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (509(a)(2))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1977
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Assets (IRS master file)
- $3,636,718
- Income (IRS master file)
- $3,287,101
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $3,014,155 | $2,681,770 | $3,636,718 | XML |
| 990 | December 2024 | $1,585,370 | $1,567,125 | $3,678,825 | XML |
| 990 | December 2023 | $1,577,352 | $1,847,424 | $2,753,019 | XML |
| 990 | December 2022 | $2,242,320 | $1,555,709 | $2,880,192 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
| 990 | December 2017 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 41-1306908).
Questions about PRADER-WILLI SYNDROME ASSOCIATION
- What is the EIN of PRADER-WILLI SYNDROME ASSOCIATION?
- The employer identification number (EIN) of PRADER-WILLI SYNDROME ASSOCIATION is 41-1306908.
- Is PRADER-WILLI SYNDROME ASSOCIATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1977.
- Are donations to PRADER-WILLI SYNDROME ASSOCIATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does PRADER-WILLI SYNDROME ASSOCIATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of PRADER-WILLI SYNDROME ASSOCIATION due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did PRADER-WILLI SYNDROME ASSOCIATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of PRADER-WILLI SYNDROME ASSOCIATION?
- The 990 for the year ended December 31, 2025 names STACY WARD.
- Who are the officers and directors of PRADER-WILLI SYNDROME ASSOCIATION?
- The 990 for the year ended December 31, 2025 lists 14 people; 1 received compensation from the organization, the highest $134,856 (STACY WARD, CEO).
- How much revenue does PRADER-WILLI SYNDROME ASSOCIATION have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $3,014,155, expenses of $2,681,770 and total assets of $3,636,718 at year end.
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