Form 990 for tax year 2024
Filed by PRADER-WILLI SYNDROME ASSOCIATION.
Totals
- Total revenue
- $1,585,370
- Total expenses
- $1,567,125
- Contributions and grants received
- $1,446,508
- Grants paid
- $12,905
- Program service revenue
- $77,353
- Investment income
- $61,509
- Other revenue
- $0
- Total assets, end of year
- $3,678,825
- Total liabilities, end of year
- $778,529
- Net assets or fund balances, end of year
- $2,900,296
- Program services expenses (Part IX)
- $1,157,725
- Management and general expenses
- $261,707
- Fundraising expenses
- $147,693
- Program service expenses (Part III)
- $1,157,725
Program services were 73.9% 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
$297,414
-
1f · All other contributions, gifts and grants
$1,149,094
-
2a · Program service revenue: CONFERENCE REVENUE
total $13,625 · unrelated business $0 · excluded $0
-
2b · Program service revenue: RESIDENTIAL CARE TRAINING
total $28,338 · unrelated business $0 · excluded $0
-
2c · Program service revenue: SCHOOL TRAINING
total $6,248 · unrelated business $0 · excluded $0
-
2d · Program service revenue: EDUCATION MATERIALS
total $1,573 · unrelated business $0 · excluded $0
-
2e · Program service revenue: DRUG TRIAL ASSISTANCE
total $25,960 · unrelated business $0 · excluded $0
-
2f · All other program service revenue
total $1,609 · unrelated business $0 · excluded $0
-
3 · Investment income
total $58,096 · unrelated business $0 · excluded $58,096
-
7a · Gross sales of assets other than inventory
securities $30,976
-
7b · Less cost or other basis and sales expenses
securities $27,563
-
7c · Gain or loss
securities $3,413
-
7d · Net gain or loss
total $3,413 · related or exempt $0 · unrelated business $0 · excluded $3,413
-
8a · Fundraising events: gross income
$0
-
8a · Fundraising events: contributions included on line 1c
$297,414
-
8b · Fundraising events: direct expenses
$0
-
8c · Net income from fundraising events
total $0 · unrelated business $0 · excluded $0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $0 · program services $0
-
2 · Grants to domestic individuals
total $12,905 · program services $12,905
-
3 · Grants to foreign organizations and individuals
total $0 · program services $0
-
4 · Benefits paid to or for members
total $0 · program services $0
-
5 · Compensation of officers, directors and key employees
total $102,259 · program services $61,356 · management and general $20,451 · fundraising $20,452
-
7 · Other salaries and wages
total $678,234 · program services $613,589 · management and general $41,879 · fundraising $22,766
-
8 · Pension plan contributions
total $6,336 · program services $1,726 · management and general $4,610 · fundraising $0
-
9 · Other employee benefits
total $43,550 · program services $20,094 · management and general $16,080 · fundraising $7,376
-
10 · Payroll taxes
total $57,426 · program services $22,464 · management and general $23,815 · fundraising $11,147
-
11c · Fees: accounting
total $13,400 · program services $0 · management and general $13,400 · fundraising $0
-
11f · Fees: investment management
total $7,752 · program services $0 · management and general $7,752 · fundraising $0
-
11g · Fees: other
total $15,915 · program services $97 · management and general $16 · fundraising $15,802
-
12 · Advertising and promotion
total $2,824 · program services $2,766 · management and general $38 · fundraising $20
-
14 · Information technology
total $73,107 · program services $58,895 · management and general $8,480 · fundraising $5,732
-
17 · Travel
total $105,855 · program services $102,130 · management and general $24 · fundraising $3,701
-
19 · Conferences, conventions and meetings
total $41,582 · program services $5,915 · management and general $35,155 · fundraising $512
-
21 · Payments to affiliates
total $27,849 · program services $849 · management and general $27,000 · fundraising $0
-
22 · Depreciation, depletion and amortization
total $9,275 · program services $7,513 · management and general $1,140 · fundraising $622
-
23 · Insurance
total $4,336 · program services $3,482 · management and general $553 · fundraising $301
-
24a · Other expenses: SERVICE PROVIDERS
total $47,463 · program services $23,783 · management and general $21,220 · fundraising $2,460
-
24b · Other expenses: SUPPLIES
total $39,218 · program services $11,900 · management and general $1,143 · fundraising $26,175
-
24c · Other expenses: SOFTWARE
total $46,395 · program services $30,927 · management and general $13,754 · fundraising $1,714
-
24d · Other expenses: CATERING
total $110,054 · program services $107,933 · management and general $0 · fundraising $2,121
-
24e · All other expenses
total $121,390 · program services $69,401 · management and general $25,197 · fundraising $26,792
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $198,045 · end of year $303,910
-
4 · Accounts receivable
beginning of year $7,108 · end of year $628,494
-
9 · Prepaid expenses and deferred charges
beginning of year $88,416 · end of year $163,927
-
10a · Land, buildings and equipment: cost or other basis
$52,161
-
10b · Land, buildings and equipment: accumulated depreciation
$45,528
-
10c · Land, buildings and equipment, net
beginning of year $14,321 · end of year $6,633
-
11 · Investments: publicly traded securities
beginning of year $1,231,348 · end of year $1,283,042
-
15 · Other assets
beginning of year $1,213,781 · end of year $1,292,819
-
17 · Accounts payable and accrued expenses
beginning of year $54,396 · end of year $86,122
-
19 · Deferred revenue
end of year $692,407
-
27 · Net assets without donor restrictions
beginning of year $1,088,865 · end of year $1,239,195
-
28 · Net assets with donor restrictions
beginning of year $1,609,758 · end of year $1,661,101
Mission and programs · 2024
Mission
TO ENCHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME
-
FAMILY 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.
Expenses $668,057 · Grants $12,601 · Revenue $34,585
-
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. 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.
Expenses $438,454 · Revenue $3,182
-
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. 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.
Expenses $51,214 · Grants $10,000 · Revenue $25,960
As filed on the 2024 return.
Listed in Part VII
-
Stacy WardSTACY WARD
CHIEF EXECUTIVE OFFICER
- Total calculated
- $102,259
- From this org
- $102,259
- From related orgs
- $0
- Other
- $0
- Hours/week
- 50
-
Marguerite RupnowMARGUERITE RUPNOW
CHAIR
- Total calculated
- $0
- Hours/week
- 5
-
Mitch CohenMITCH COHEN
VICE CHAIR
- Total calculated
- $0
- Hours/week
- 3
-
Denise ServaisDENISE SERVAIS
SECRETARY
- Total calculated
- $0
- Hours/week
- 3
-
Tina ThlenfeldTINA THLENFELD
TREASURER
- Total calculated
- $0
- Hours/week
- 3
-
Tim HearnTIM HEARN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 3
-
John LensJOHN LENS
DIRECTOR
- Total calculated
- $0
- Hours/week
- 3
-
Michelle TolbertMICHELLE TOLBERT
DIRECTOR
- Total calculated
- $0
- Hours/week
- 3
-
Matt McCleeryMATT MCCLEERY
DIRECTOR
- Total calculated
- $0
- Hours/week
- 3
-
Kathryn LuceroKATHRYN LUCERO
DIRECTOR
- Total calculated
- $0
- Hours/week
- 3
-
Lisa LambLISA LAMB
DIRECTOR
- Total calculated
- $0
- Hours/week
- 3
-
Jeff CovingtonJEFF COVINGTON
DIRECTOR
- Total calculated
- $0
- Hours/week
- 3
-
Ann ScheimannANN SCHEIMANN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 3
-
Clint HurdleCLINT HURDLE
DIRECTOR
- Total calculated
- $0
- Hours/week
- 3
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.
Grants on this return
No itemized grants to organizations on this return.
Provenance
- Return type
- form_990
- Tax year
- 2024
- Filed
- 9 June 2025
- IRS schema version
- 2024v5.1
- Source object
- 202521619349301752
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