Civic Intelligence

Prader-Willi Syndrome Association (USA)

990 • Fiscal year 2013 • EIN 41-1306908

Jan 01, 2013 to Dec 31, 2013 • Filed on Jul 25, 2014

Organization ProfileWWW.PWSAUSA.ORG
8588 Potter Park Drive Suite 500Brandon, FL 34238

(941) 312-0400

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

44th percentile

0.08x

Higher debt load relative to assets than 44% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Liabilities / Revenue

46th percentile

0.09x

Higher debt load relative to revenue than 46% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Net Margin

14th percentile

-19%

Higher net margin than 14% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Top Officer Pay

38th percentile

$0

Higher top officer pay than 38% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Asset Growth

17th percentile

-6.7%

Faster asset growth than 17% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2012 to 2013

Revenue Growth

Score unavailable

No value available

No earlier valid filing was available within the previous three public years.

Source year 2013

Balance Sheet
Liabilities / Assets44th percentile

Assets

Down

$1,375,285

Down $99,288 (-6.7%) from 2012

Net Assets

Down

$1,266,074

Down $137,224 (-9.8%) from 2012

Liabilities

Up

$109,211

Up $37,936 (+53%) from 2012

Revenue And Expenses
Liabilities / Revenue46th percentileNet Margin14th percentile

Revenue

$1,209,510

No earlier filing loaded for comparison.

Expenses

Up

$1,440,266

Up $355,784 (+33%) from 2012

Net Income

-$230,756

No earlier filing loaded for comparison.

Historical Trend

Balance Sheet Trend

Asset Growth17th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$4.0M$3.0M$2.0M$1.0M$0Assets 2010: $1,552,155Liabilities 2010: $47,462Net Assets 2010: $1,504,6932010Assets 2011: $1,537,043Liabilities 2011: $113,733Net Assets 2011: $1,423,3102011Assets 2012: $1,474,573Liabilities 2012: $71,275Net Assets 2012: $1,403,2982012Assets 2013: $1,375,285Liabilities 2013: $109,211Net Assets 2013: $1,266,0742013Assets 2014: $1,512,024Liabilities 2014: $99,130Net Assets 2014: $1,412,8942014Assets 2015: $1,980,049Liabilities 2015: $240,473Net Assets 2015: $1,739,5762015Assets 2016: $2,434,992Liabilities 2016: $71,811Net Assets 2016: $2,363,1812016Assets 2017: $2,074,188Liabilities 2017: $306,014Net Assets 2017: $1,768,1742017Assets 2018: $1,829,880Liabilities 2018: $170,586Net Assets 2018: $1,659,2942018Assets 2019: $2,200,383Liabilities 2019: $579,542Net Assets 2019: $1,620,8412019Assets 2020: $1,920,086Liabilities 2020: $107,681Net Assets 2020: $1,812,4052020Assets 2021: $2,440,137Liabilities 2021: $53,581Net Assets 2021: $2,386,5562021Assets 2022: $2,880,192Liabilities 2022: $112,201Net Assets 2022: $2,767,9912022Assets 2023: $2,753,019Liabilities 2023: $54,396Net Assets 2023: $2,698,6232023Assets 2024: $3,678,825Liabilities 2024: $778,529Net Assets 2024: $2,900,2962024

Highlighted filing

2013

Assets$1,375,285
Liabilities$109,211
Net Assets$1,266,074
Open 2013 Filing

Operations Trend

Revenue GrowthScore unavailable

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$3.0M$2.0M$1.0M$0-$1.0MExpenses 2010: $1,066,4302010Expenses 2011: $1,295,2462011Expenses 2012: $1,084,4822012Revenue 2013: $1,209,510Expenses 2013: $1,440,266Net Income 2013: -$230,7562013Revenue 2014: $1,358,953Expenses 2014: $1,208,873Net Income 2014: $150,0802014Revenue 2015: $1,844,062Expenses 2015: $1,454,509Net Income 2015: $389,5532015Revenue 2016: $2,069,104Expenses 2016: $1,443,614Net Income 2016: $625,4902016Revenue 2017: $1,379,822Expenses 2017: $2,018,842Net Income 2017: -$639,0202017Revenue 2018: $1,261,658Expenses 2018: $1,223,962Net Income 2018: $37,6962018Revenue 2019: $1,498,022Expenses 2019: $1,730,503Net Income 2019: -$232,4812019Revenue 2020: $1,219,448Expenses 2020: $1,200,266Net Income 2020: $19,1822020Revenue 2021: $1,719,245Expenses 2021: $1,238,362Net Income 2021: $480,8832021Revenue 2022: $2,242,320Expenses 2022: $1,555,709Net Income 2022: $686,6112022Revenue 2023: $1,577,352Expenses 2023: $1,847,424Net Income 2023: -$270,0722023Revenue 2024: $1,585,370Expenses 2024: $1,567,125Net Income 2024: $18,2452024

Highlighted filing

2013

Revenue$1,209,510
Expenses$1,440,266
Net Income-$230,756
Open 2013 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2013 to Dec 31, 2013
Signed
Jul 25, 2014
Return Version
2013v3.1
Gross Receipts
$1,263,427
Mission and Program Overview

Mission

Advocate, educate and support individuals affected by prader-willi syndrome and their caregivers.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,148,024$1,067,724▼ $80,300
Cash and Non-Interest-Bearing Accounts$205,104$196,775▼ $8,329
Pledges and Grants Receivable$35,186$20,325▼ $14,861
Inventories for Sale or Use$12,342$19,177▲ $6,835
Prepaid Expenses and Deferred Charges$23,706$15,623▼ $8,083
Land, Buildings, and Equipment, Net$13,815$10,796▼ $3,019
Accounts Receivable$2,135$3,252▲ $1,117
Total Assets$1,474,573$1,375,285▼ $99,288
Other Assets Total$34,261$41,613▲ $7,352
Liabilities
Accounts Payable and Accrued Expenses$71,275$109,211▲ $37,936
Total Liabilities$71,275$109,211▲ $37,936
Net Assets / Fund Balance
Unrestricted Net Assets$690,555$681,158▼ $9,397
Temporarily Rstr Net Assets$614,922$481,468▼ $133,454
Permanently Rstr Net Assets$97,821$103,448▲ $5,627
Total Net Assets Fund Balance$1,403,298$1,266,074▼ $137,224
Total Liabilities and Net Assets / Fund Balance$1,474,573$1,375,285▼ $99,288

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$9,589$48,935$61,912
Leasehold Improvements$1,207$10,499$11,706

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2013$97,821$5,627--$103,448
2012$89,079$8,742--$97,821
2011$78,829$10,250--$89,079
2010$78,544$285--$78,829
2009$77,474$70--$77,544
Compensation and Service Providers
Top Officer Pay38th percentile

Board Members and Trustees

NameTitle
Michelle TolbertChair
Dan DriscollDirector
David AgarwalDirector
Gregg CherpesDirector
Jackie MallowDirector
Jim KoerberDirector
Lisa ThorntonDirector
Michael AltermanDirector
Michael TroopDirector
Michelle HolbrookDirector
Rob LutzDirector
Rob SeelyDirector
Sybil CohenDirector
Julie DohertySecretary
Bert MartinezTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$405,595
Program Service Revenue
$336,416
Investment Income
$63,898
Other Revenue
$403,601
All Other Contributions
$405,595
Change in Net Assets
$-230,756

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,209,510
Revenue Not Reported on Form 990
$754,289
Total Revenue per Audited Statements
$1,963,799
Total Revenue per Form 990
$1,209,510
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$648,671
Salaries, Compensation, and Employee Benefits$535,893
Grants and Similar Amounts Paid$255,702
Total Fundraising Expense$159,304
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$251,549$100,574$115,985$468,108
Conferences and Meetings$281,470--$281,470
Grants to Domestic Orgs$183,237--$183,237
Grants to Domestic Individuals$72,465--$72,465
All Other Expenses$54,614$4,214$7,325$66,153
Occupancy$52,267$6,297$4,408$62,972
Travel$34,620$4,171$2,920$41,711
Information Technology$32,166$3,875$2,713$38,754
Payroll Taxes$18,642$7,453$8,595$34,690
Other Employee Benefits$17,784$7,111$8,200$33,095
Other Expenses$11,617$1,398$980$13,995
Insurance$9,132$1,102$770$11,004
Office Expenses$8,348$1,007$704$10,059
Fees for Services Accounting-$8,400-$8,400
Depreciation Depletion$4,394$528$371$5,293
Total Functional Expenses$1,125,783$155,179$159,304$1,440,266

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,101,023
Expenses per Audited Statements$1,440,266
Total Expenses per Form 990$1,440,266
Expenses Not Reported on Form 990$660,757
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
---Pilot Study Examining Swallowing Function$64,487
---Rare Disease Clinical Research$25,000
---Rare Disease Clinical Research$25,000
---Transcranial Stim/startle Modulation$25,000
---Rare Disease Clinical Research$25,000
---Pic Model for Hyperphagia$18,750
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$442,009
Fundraising Direct Expenses$40,749
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Event 1$442,009$442,009$40,749$401,260
Total Events$442,009$442,009$40,749$401,260
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Federal income taxes-
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
Yes
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 7A

“Election of members and their rights - the organization has members that may be members of the board of directors.”

Form 990, Part VI, Section A, Line 7B

“Decisions subject to approval of members - some decisions of the governing body are subject to approval of the members of the organization.”

Form 990, Part VI, Section B, Line 10B

“Policies and procedures governing chapters - the organization has written policies and procedures governing the activities of chapters, affiliates, and branches to ensure that their operations are consistent with those of the organization.”

Form 990, Part VI, Section B, Line 11B

“Organizations process to review form 990 - the executive committee and treasurer reviewed and approved the irs form 990.”

Form 990, Part VI, Section B, Line 12C

“Enforcement of conflicts of policy - officers, directors, and key employees sign a conflict of interest form each year at the fall semi-annual board meeting.”

Form 990, Part VI, Section B, Line 15A

“Compensation process for top officials - the policy for determining compensation of the pwsa executive director includes the elements of 1 review and approval by the executive committee of board of directors 2 use of data as to comparable compensation, and 3 contemporaneous documentation and recordkeeping.”

Form 990, Part VI, Section C, Line 19

“Governing documents disclosure explanation - the association when requested will provide its governing documents, conflict of interest policy, and financial statements available to the requesting public.”

Filing and Contact Details

Filer

EIN
41-1306908
Phone
9413120400

Signing Officer

Name
Ken Smith
Title
Executive Director
Signed
2014-07-25
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Ken Smith
Formed
2000
Voting Board Members
15
Independent Board Members
15
Employees
14

Preparer

Preparer
Lawrence a Kraujalis
Phone
9415183805
Supplemental Narrative

Additional Explanations

Form 990, Part III, Line 4D

“Program Service Expenses 208,570, Grants and allocations 0, Revenue 0 RESEARCH DIRECTED AT IMPROVING CURRENT TREATMENT METHODS AND TO DEVELOP A CURE.”

Financial Statement Notes

V 4

“Intended use of endowment funds - endowment fund investments to be held indefinitely. The income from which is expendable for providing assistance to families dealing with prader-willi syndrome.”

XI 2D

“Revenue amounts included in financials - direct fund raising expenses 40,749 and other direct expense of promotional materials 13,168.”

XII 2D

“Expense amounts included in financials - direct fund raising expenses 40,749 and other direct expense of promotional materials 13,168.”

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IRS990/Form990PartVIISectionAGrp/TitleTxt10DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt11DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt12DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt13DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt14DIRECTOR
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IRS990/OtherEmployeeBenefitsGrp/TotalAmt033095
IRS990/OtherExpensesGrp/Desc0CHAPTER ACTIVITIES
IRS990/OtherExpensesGrp/Desc1NEWSLETTER
IRS990/OtherExpensesGrp/Desc2EQUIPMENT RENTAL MAINT
IRS990/OtherExpensesGrp/Desc3BANK CHARGES
IRS990/OtherExpensesGrp/FundraisingAmt04929
IRS990/OtherExpensesGrp/FundraisingAmt11404
IRS990/OtherExpensesGrp/FundraisingAmt2980
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt07042
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt12007
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt21398
IRS990/OtherExpensesGrp/ProgramServicesAmt058448
IRS990/OtherExpensesGrp/ProgramServicesAmt118379
IRS990/OtherExpensesGrp/ProgramServicesAmt216651
IRS990/OtherExpensesGrp/ProgramServicesAmt311617
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IRS990/OtherExpensesGrp/TotalAmt118379
IRS990/OtherExpensesGrp/TotalAmt220062
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IRS990/PoliciesReferenceChaptersInd0true
IRS990/PoliticalCampaignActyInd0false
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IRS990/PrincipalOfficerNm0KEN SMITH
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IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt1291881
IRS990/ProgSrvcAccomActy2Grp/Desc0CRISIS AND INTERVENTION TRAINING TO ASSIST IN TREATMENT AND SUPPORT.
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IRS990/ProgSrvcAccomActy2Grp/GrantAmt072465
IRS990/ProgSrvcAccomActy3Grp/Desc0DISTRIBUTION OF EDUCATIONAL MATERIALS AND PARENT INTERVENTION REGARDING PRADER-WILLI SYNDROME.
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IRS990/PYContributionsGrantsAmt0426677
IRS990/PYExcessBenefitTransInd0false
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IRS990/PYOtherRevenueAmt0364120
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IRS990/ReconcilationRevenueExpnssAmt0-230756
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IRS990/ReportLandBuildingEquipmentInd0true
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IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt0104375
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IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt0964188

Document Assets

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Filings

Displayed year

2013 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$1,375,285
Liabilities
$109,211
Net assets
$1,266,074
Revenue
$1,209,510
Expenses
$1,440,266
Net income
-$230,756
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$3.68$0.78$2.90$1.59$1.57$0.02
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.75$0.05$2.70$1.58$1.85$0.27
2022Detailed filing. Detailed filing data is available for this year.$2.88$0.11$2.77$2.24$1.56$0.69
2021Detailed filing. Detailed filing data is available for this year.$2.44$0.05$2.39$1.72$1.24$0.48
2020Detailed filing. Detailed filing data is available for this year.$1.92$0.11$1.81$1.22$1.20$0.02
2019Detailed filing. Detailed filing data is available for this year.$2.20$0.58$1.62$1.50$1.73$0.23
2018Detailed filing. Detailed filing data is available for this year.$1.83$0.17$1.66$1.26$1.22$0.04
2017Detailed filing. Detailed filing data is available for this year.$2.07$0.31$1.77$1.38$2.02$0.64
2016Detailed filing. Detailed filing data is available for this year.$2.43$0.07$2.36$2.07$1.44$0.63
2015Detailed filing. Detailed filing data is available for this year.$1.98$0.24$1.74$1.84$1.45$0.39
2014Detailed filing. Detailed filing data is available for this year.$1.51$0.10$1.41$1.36$1.21$0.15
2013Detailed filing. Detailed filing data is available for this year.$1.38$0.11$1.27$1.21$1.44$0.23
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.47$0.07$1.40$1.08
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.54$0.11$1.42$1.30
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.55$0.05$1.50$1.07
Peer Organizations

Similar nonprofits based on the same Siviq industry and scale cohort. 2013 filings • 501(c)3 • $1M-$5M nonprofits