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Nonprofiteer
← PRADER-WILLI SYNDROME ASSOCIATION

Form 990 for tax year 2025

Filed by PRADER-WILLI SYNDROME ASSOCIATION.

Totals

Total revenue
$3,014,155
Total expenses
$2,681,770
Contributions and grants received
$2,666,053
Grants paid
$50,000
Program service revenue
$471,288
Investment income
$71,330
Other revenue
-$194,516
Total assets, end of year
$3,636,718
Total liabilities, end of year
$148,208
Net assets or fund balances, end of year
$3,488,510
Program services expenses (Part IX)
$2,220,552
Management and general expenses
$203,487
Fundraising expenses
$257,731
Program service expenses (Part III)
$2,220,552

Program services were 82.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $735,858

  • 1f · All other contributions, gifts and grants

    $1,930,195

  • 2a · Program service revenue: CONVENTION REVENUE

    total $471,288 · related or exempt $471,288

  • 3 · Investment income

    total $71,330 · excluded $71,330

  • 8a · Fundraising events: gross income

    $0

  • 8a · Fundraising events: contributions included on line 1c

    $735,858

  • 8b · Fundraising events: direct expenses

    $272,946

  • 8c · Net income from fundraising events

    total -$272,946 · excluded -$272,946

  • 11a · Other revenue: MISCELLANEOUS REVENUE

    total $78,430 · related or exempt $78,430

  • 11e · Other revenue, total

    $78,430

Functional expenses

Part IX, the statement of functional expenses.

  • 2 · Grants to domestic individuals

    total $50,000 · program services $50,000

  • 7 · Other salaries and wages

    total $835,004 · program services $693,054 · management and general $75,150 · fundraising $66,800

  • 8 · Pension plan contributions

    total $8,977 · program services $7,451 · management and general $808 · fundraising $718

  • 9 · Other employee benefits

    total $157,172 · program services $126,691 · management and general $19,314 · fundraising $11,167

  • 10 · Payroll taxes

    total $75,354 · program services $62,544 · management and general $6,782 · fundraising $6,028

  • 11g · Fees: other

    total $168,780 · program services $146,388 · management and general $16,788 · fundraising $5,604

  • 12 · Advertising and promotion

    total $49,150 · program services $47,800 · fundraising $1,350

  • 13 · Office expenses

    total $108,879 · program services $19,355 · management and general $715 · fundraising $88,809

  • 14 · Information technology

    total $235,288 · program services $207,952 · management and general $6,964 · fundraising $20,372

  • 16 · Occupancy

    total $11,916 · program services $10,832 · management and general $592 · fundraising $492

  • 17 · Travel

    total $112,087 · program services $94,988 · management and general $1,982 · fundraising $15,117

  • 19 · Conferences, conventions and meetings

    total $25,933 · management and general $25,933

  • 22 · Depreciation, depletion and amortization

    total $3,418 · program services $2,837 · management and general $308 · fundraising $273

  • 23 · Insurance

    total $3,070 · program services $2,585 · management and general $265 · fundraising $220

  • 24a · Other expenses: CATERING

    total $252,975 · program services $220,369 · fundraising $32,606

  • 24b · Other expenses: VENUE AND GRATUITY

    total $225,533 · program services $225,533

  • 24c · Other expenses: OTHER-PROFIT SPLIT

    total $220,559 · program services $220,520 · management and general $25 · fundraising $14

  • 24d · Other expenses: BANK FEES

    total $45,753 · program services $18,116 · management and general $27,637

  • 24e · All other expenses

    total $91,922 · program services $63,537 · management and general $20,224 · fundraising $8,161

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $303,910 · end of year $684,922

  • 4 · Accounts receivable

    beginning of year $628,494 · end of year $11,802

  • 9 · Prepaid expenses and deferred charges

    beginning of year $163,927 · end of year $178,480

  • 10a · Land, buildings and equipment: cost or other basis

    $40,391

  • 10b · Land, buildings and equipment: accumulated depreciation

    $31,844

  • 10c · Land, buildings and equipment, net

    beginning of year $6,633 · end of year $8,547

  • 11 · Investments: publicly traded securities

    beginning of year $1,283,042 · end of year $2,017,901

  • 15 · Other assets

    beginning of year $1,292,819 · end of year $735,066

  • 17 · Accounts payable and accrued expenses

    beginning of year $86,122 · end of year $148,208

  • 19 · Deferred revenue

    beginning of year $692,407

  • 27 · Net assets without donor restrictions

    beginning of year $1,239,195 · end of year $2,159,672

  • 28 · Net assets with donor restrictions

    beginning of year $1,661,101 · end of year $1,328,838

Mission and programs · 2025

Mission

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

  • 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.

Listed in Part VII

  • Marguerite Rupnow

    CHAIRMAN OF THE BOARD

    Total calculated
    $0
    Hours/week
    3

  • Tina Ihenfeld

    TREASURER

    Total calculated
    $0
    Hours/week
    5

  • Denise Servais

    SECRETARY

    Total calculated
    $0
    Hours/week
    3

  • Jeffrey Covington

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Kathryn Lucero

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Ann Scheimann

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Tim Hearn

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Clint Hurdle

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • John Lens

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Michelle Torbert

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Lisa Lamb

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Mitch Cohen

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Matt McCleery

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Stacy Ward

    CEO

    Total calculated
    $134,856
    From this org
    $134,856
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

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.

Schedule J

Answered yes

  • 3 · Written employment contract
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

Provenance

Return type
form_990
Tax year
2025
Filed
22 June 2026
IRS schema version
2025v4.2
Source object
202621759349300612

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