PRADER-WILLI SYNDROME ASSOCIATION

As filed

Subsection

03

Classification

1200

Street

1032 E BRANDON BLVD 4744

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2025

• 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 MISCELLANEOUS

  Expenses $859,925 · Revenue $1,047,634

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. Earlier years are each on their own filing page.

Filings

• 2025

  Revenue

  $3,014,155

  Expenses

  $2,681,770

  Contributions

  $2,666,053

  Grants paid

  $50,000

• 2024

  Revenue

  $1,585,370

  Expenses

  $1,567,125

  Contributions

  $1,446,508

  Grants paid

  $12,905

• 2023

  Revenue

  $1,577,352

  Expenses

  $1,847,424

  Contributions

  $1,353,277

  Grants paid

  $55,134

• 2022

  Revenue

  $2,242,320

  Expenses

  $1,555,709

  Contributions

  $2,117,419

  Grants paid

  $129,812

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $1,719,245

  Expenses

  $1,238,362

  Assets (EOY)

  $2,440,137

• 2020 · 990

  Revenue

  $1,219,448

  Expenses

  $1,200,266

  Assets (EOY)

  $1,920,086

• 2019 · 990

  Revenue

  $1,498,022

  Expenses

  $1,730,503

  Assets (EOY)

  $2,200,383

• 2018 · 990

  Revenue

  $1,261,658

  Expenses

  $1,223,962

  Assets (EOY)

  $1,829,880

• 2017 · 990

  Revenue

  $1,379,822

  Expenses

  $2,018,842

  Assets (EOY)

  $2,074,188

• 2017 · 990

  Revenue

  $1,436,803

  Expenses

  $1,917,524

  Assets (EOY)

  $2,069,063

• 2016 · 990

  Revenue

  $2,069,104

  Expenses

  $1,443,614

  Assets (EOY)

  $2,434,992

• 2015 · 990

  Revenue

  $1,844,062

  Expenses

  $1,454,509

  Assets (EOY)

  $1,980,049

• 2014 · 990

  Revenue

  $1,358,953

  Expenses

  $1,208,873

  Assets (EOY)

  $1,512,024

• 2013 · 990

  Revenue

  $1,209,510

  Expenses

  $1,440,266

  Assets (EOY)

  $1,375,285

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

• THE CHICAGO SCHOOL OF PROF PSYCHOLOGY LA

  $94,812

  2022 · PARENT TRAINING PROGRAM AND PWS HOMEBASE

• THE CHICAGO SCHOOL

  $45,000

  2025 · EDUCATION AN DHOME BASED SUPPORT

• UNIVERSITY OF FLORIDA BOARD OF TRUSTEES

  $44,460

  2023 · NUTRITIONAL PHASES

• UNIVERSITY OF SOUTH FLORIDA

  $25,000

  2022 · DMCC @ USF ANNUAL SUPPORT FOR PROTOCOL 52 AND 8208

Where these grants went next →

Grants received

• THE PITTSBURGH FOUNDATION

  $213,600

  2023 · BIRTH DEFECTS AND GENETIC DISEASES RESEARCH

• THE PITTSBURGH FOUNDATION

  $202,000

  2022 · EATING DISORDERS AND ADDICTIONS

• THE PITTSBURGH FOUNDATION

  $100,000

  2024 · MEDICAL RESEARCH

• DONOR ADVISED CHARITABLE GIVING

  $84,950

  2024 · HEALTH

• DONOR ADVISED CHARITABLE GIVING

  $73,950

  2023 · HEALTH

• DONOR ADVISED CHARITABLE GIVING

  $61,200

  2022 · HEALTH

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $29,000

  2024 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $26,608

  2022 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $22,840

  2023 · For grant recipient's exempt purposes

• GREATER CINCINNATI FOUNDATION

  $20,000

  2024 · PROGRAMATIC SUPPORT

The 10 largest by cash amount. The API serves every itemized grant.

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