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← PRADER-WILLI SYNDROME ASSOCIATION

Form 990 for tax year 2022

Filed by PRADER-WILLI SYNDROME ASSOCIATION.

Totals

Total revenue
$2,242,320
Total expenses
$1,555,709
Contributions and grants received
$2,117,419
Grants paid
$129,812
Program service revenue
$23,978
Investment income
$100,611
Other revenue
$312
Total assets, end of year
$2,880,192
Total liabilities, end of year
$112,201
Net assets or fund balances, end of year
$2,767,991
Program services expenses (Part IX)
$897,704
Management and general expenses
$306,135
Fundraising expenses
$351,870
Program service expenses (Part III)
$897,704

Program services were 57.7% 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

    $518,417

  • 1f · All other contributions, gifts and grants

    $1,599,002

  • 2a · Program service revenue: RESIDENTIAL CARE TRAIN

    total $16,876 · related or exempt $16,876

  • 2b · Program service revenue: SCHOOL TRAINING

    total $5,440 · related or exempt $5,440

  • 2c · Program service revenue: EDUCATION MATERIAL

    total $1,662 · related or exempt $1,662

  • 3 · Investment income

    total $94,156 · excluded $94,156

  • 7a · Gross sales of assets other than inventory

    other assets $6,455

  • 7b · Less cost or other basis and sales expenses

    other assets $0

  • 7c · Gain or loss

    other assets $6,455

  • 7d · Net gain or loss

    total $6,455 · excluded $6,455

  • 8a · Fundraising events: gross income

    $53,749

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

    $518,417

  • 8b · Fundraising events: direct expenses

    $53,749

  • 8c · Net income from fundraising events

    total $0

  • 10a · Gross sales of inventory

    $312

  • 10b · Cost of goods sold

    $0

  • 10c · Net income from sales of inventory

    total $312 · related or exempt $312

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $119,812 · program services $119,812

  • 2 · Grants to domestic individuals

    total $10,000 · program services $10,000

  • 7 · Other salaries and wages

    total $778,400 · program services $446,350 · management and general $153,804 · fundraising $178,246

  • 8 · Pension plan contributions

    total $14,645 · program services $8,398 · management and general $2,894 · fundraising $3,353

  • 9 · Other employee benefits

    total $61,786 · program services $35,429 · management and general $12,208 · fundraising $14,149

  • 10 · Payroll taxes

    total $64,179 · program services $36,802 · management and general $12,681 · fundraising $14,696

  • 11c · Fees: accounting

    total $5,726 · program services $3,283 · management and general $1,131 · fundraising $1,312

  • 11f · Fees: investment management

    total $6,272 · management and general $6,272

  • 11g · Fees: other

    total $33,791 · program services $12,365 · management and general $16,488 · fundraising $4,938

  • 12 · Advertising and promotion

    total $19,942 · program services $14,906 · management and general $231 · fundraising $4,805

  • 13 · Office expenses

    total $29,213 · program services $10,887 · management and general $16,132 · fundraising $2,194

  • 14 · Information technology

    total $62,990 · program services $36,169 · management and general $12,378 · fundraising $14,443

  • 16 · Occupancy

    total $64,435 · program services $36,999 · management and general $12,662 · fundraising $14,774

  • 17 · Travel

    total $9,716 · program services $3,738 · management and general $1,499 · fundraising $4,479

  • 19 · Conferences, conventions and meetings

    total $50,075 · program services $5,896 · management and general $42,344 · fundraising $1,835

  • 22 · Depreciation, depletion and amortization

    total $9,290 · program services $5,335 · management and general $1,825 · fundraising $2,130

  • 23 · Insurance

    total $7,043 · program services $4,044 · management and general $1,384 · fundraising $1,615

  • 24a · Other expenses: ADVOCACY AND AWARENESS

    total $93,403 · program services $93,403

  • 24b · Other expenses: DEVELOPMENT EXPENSES

    total $88,901 · fundraising $88,901

  • 24c · Other expenses: FAMILY SUPPORT

    total $13,888 · program services $13,888

  • 24d · Other expenses: LICENSES AND TAXES

    total $7,155 · management and general $7,155

  • 24e · All other expenses

    total $5,047 · management and general $5,047

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $464,239 · end of year $365,651

  • 4 · Accounts receivable

    beginning of year $65,593 · end of year $37,624

  • 8 · Inventories for sale or use

    beginning of year $5,000 · end of year $2,221

  • 9 · Prepaid expenses and deferred charges

    beginning of year $15,322 · end of year $83,291

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

    $47,263

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

    $26,803

  • 10c · Land, buildings and equipment, net

    beginning of year $28,117 · end of year $20,460

  • 11 · Investments: publicly traded securities

    beginning of year $1,852,116 · end of year $1,599,153

  • 15 · Other assets

    beginning of year $9,750 · end of year $771,792

  • 17 · Accounts payable and accrued expenses

    beginning of year $51,581 · end of year $69,881

  • 19 · Deferred revenue

    beginning of year $2,000 · end of year $42,320

  • 27 · Net assets without donor restrictions

    beginning of year $1,515,879 · end of year $1,169,711

  • 28 · Net assets with donor restrictions

    beginning of year $870,677 · end of year $1,598,280

Mission and programs · 2022

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 2022, PWSA'S FAMILY SUPPORT TEAM RESPONDED TO 3,447 FAMILY SUPPORT INQUIRIES PROVIDING SUPPORT TO FAMILIES IN ALL 50 U.S. STATES AND MORE THAN 20 DIFFERENT COUNTRIES, TRAINED 10 SCHOOLS AND 9 PROVIDER AGENCIES, AND HOSTED A VIRTUAL SLEEP SUMMIT AND A HEALTH CARE ADVOCACY WEBINAR SERIES REACHING OVER 700 REGISTRANTS FOR EACH EVENT.

    Expenses $465,673 · Revenue $24,290

  • 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 2022, PWSA CONDUCTED A DC FLY-IN FOR 51 ADVOCATES REPRESENTING 21 STATES WHO ATTENDED A COMBINED 76 CONGRESSIONAL MEETINGS AND HOSTED 11 ADVOCACY IN ACTION WEBINARS FOR OUR COMMUNITY.

    Expenses $257,056 · Grants $10,000

  • 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 2022, PWSA PAID OUT RESEARCH GRANTS TOTALING $119,812 AND RECEIVED THE FINDINGS FROM 3 OF OUR GRANT FUNDED PROJECTS.

    Expenses $174,975 · Grants $119,812

As filed on the 2022 return.

Listed in Part VII

  • Jeffrey Covington

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Lisa Lamb

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Julie Doherty

    SECRETARY

    Total calculated
    $0
    Hours/week
    3

  • Pam Zambrotta

    TREASURER

    Total calculated
    $0
    Hours/week
    5

  • Clint Hurdle

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Mitchell Cohen

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • John Lens

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Kathryn Lucero

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Tammie Penta

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Marguerite Rupnow

    CHAIR

    Total calculated
    $0
    Hours/week
    5

  • Tim Hearn

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Matt McCleery

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Denise Servais

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Michelle Torbert

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Ann Scheimann

    DIRECTOR

    Total calculated
    $0
    Hours/week
    3

  • Paige Rivard

    EXECUTIVE DIRECTOR

    Total calculated
    $156,007
    From this org
    $151,463
    From related orgs
    $0
    Other
    $4,544
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $151,463
    Bonus
    $0
    Other
    $0
    Deferred
    $4,544
    Nontaxable benefits
    $0
    Filer's total
    $156,007

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. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

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
2022
Filed
12 September 2023
IRS schema version
2022v5.0
Source object
202323059349301472

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