Civic Intelligence

Phelan Mcdermid Syndrome Foundation

990 • Fiscal year 2013 • EIN 04-3673104

Jan 01, 2013 to Dec 31, 2013 • Filed on May 12, 2014

Organization ProfileWWW.PMSF.ORG
200 Capri Isles BoulevardOsprey, FL 34292

(941) 485-8000

Siviq Scores

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

Liabilities / Assets

59th percentile

0.11x

Higher debt load relative to assets than 59% of similar nonprofits.

2013 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2013

Liabilities / Revenue

66th percentile

0.13x

Higher debt load relative to revenue than 66% of similar nonprofits.

2013 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2013

Net Margin

87th percentile

37%

Higher net margin than 87% of similar nonprofits.

2013 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2013

Top Officer Pay

49th percentile

$673

Higher top officer pay than 49% of similar nonprofits.

Top officer pay equals 0.1% of source-year revenue.

2013 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2013

Asset Growth

85th percentile

33%

Faster asset growth than 85% of similar nonprofits.

2013 filings • 501(c)3 • $500k-$1M 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 / Assets59th percentile

Assets

Up

$562,228

Up $138,232 (+33%) from 2012

Net Assets

Up

$502,754

Up $167,902 (+50%) from 2012

Liabilities

Down

$59,474

Down $29,670 (-33%) from 2012

Revenue And Expenses
Liabilities / Revenue66th percentileNet Margin87th percentile

Revenue

$452,384

No earlier filing loaded for comparison.

Expenses

Down

$284,482

Down $125,343 (-31%) from 2012

Net Income

$167,902

No earlier filing loaded for comparison.

Historical Trend

Balance Sheet Trend

Asset Growth85th percentile

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

$3.0M$2.0M$1.0M$0Assets 2011: $420,902Liabilities 2011: $58,022Net Assets 2011: $362,8802011Assets 2012: $423,996Liabilities 2012: $89,144Net Assets 2012: $334,8522012Assets 2013: $562,228Liabilities 2013: $59,474Net Assets 2013: $502,7542013Assets 2014: $826,825Liabilities 2014: $275,255Net Assets 2014: $551,5702014Assets 2015: $1,047,572Liabilities 2015: $283,140Net Assets 2015: $764,4322015Assets 2016: $1,193,813Liabilities 2016: $203,367Net Assets 2016: $990,4462016Assets 2017: $1,197,242Liabilities 2017: $163,062Net Assets 2017: $1,034,1802017Assets 2018: $1,423,117Liabilities 2018: $89,279Net Assets 2018: $1,333,8382018Assets 2019: $1,427,059Liabilities 2019: $15,392Net Assets 2019: $1,411,6672019Assets 2020: $1,639,670Liabilities 2020: $123,193Net Assets 2020: $1,516,4772020Assets 2021: $1,940,384Liabilities 2021: $24,329Net Assets 2021: $1,916,0552021Assets 2022: $2,113,920Liabilities 2022: $59,480Net Assets 2022: $2,054,4402022Assets 2023: $2,243,009Liabilities 2023: $216,181Net Assets 2023: $2,026,8282023Assets 2024: $2,109,869Liabilities 2024: $210,527Net Assets 2024: $1,899,3422024Assets 2025: $2,220,653Liabilities 2025: $154,468Net Assets 2025: $2,066,1852025

Highlighted filing

2013

Assets$562,228
Liabilities$59,474
Net Assets$502,754
Open 2013 Filing

Operations Trend

Revenue GrowthScore unavailable

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

$1.5M$1.0M$500K$0-$500KExpenses 2011: $366,1222011Expenses 2012: $409,8252012Revenue 2013: $452,384Expenses 2013: $284,482Net Income 2013: $167,9022013Revenue 2014: $911,724Expenses 2014: $862,908Net Income 2014: $48,8162014Revenue 2015: $1,137,997Expenses 2015: $925,135Net Income 2015: $212,8622015Revenue 2016: $1,272,080Expenses 2016: $1,046,066Net Income 2016: $226,0142016Revenue 2017: $1,162,999Expenses 2017: $1,119,265Net Income 2017: $43,7342017Revenue 2018: $1,199,078Expenses 2018: $899,420Net Income 2018: $299,6582018Revenue 2019: $656,384Expenses 2019: $578,555Net Income 2019: $77,8292019Revenue 2020: $560,200Expenses 2020: $455,390Net Income 2020: $104,8102020Revenue 2021: $897,002Expenses 2021: $497,424Net Income 2021: $399,5782021Revenue 2022: $853,648Expenses 2022: $715,263Net Income 2022: $138,3852022Revenue 2023: $1,062,761Expenses 2023: $1,098,819Net Income 2023: -$36,0582023Revenue 2024: $1,306,884Expenses 2024: $1,437,564Net Income 2024: -$130,6802024Revenue 2025: $1,245,861Expenses 2025: $1,082,374Net Income 2025: $163,4872025

Highlighted filing

2013

Revenue$452,384
Expenses$284,482
Net Income$167,902
Open 2013 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2013 to Dec 31, 2013
Signed
May 12, 2014
Return Version
2013v3.1
Gross Receipts
$480,412
Mission and Program Overview

Mission

The mission of the Phelan-McDermid Syndrome Foundation is to make today better and the future brighter for everyone living with Phelan-McDermid syndrome - from the moment of diagnosis to the delivery of treatments and cures.

The mission of phelan-mcdermid syndrome foundation is to improve the quality of life of people affected by phelan-mcdermid syndrome worldwide by accelerating research, providing family support and raising awareness.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$281,072$348,667▲ $67,595
Cash and Non-Interest-Bearing Accounts$103,813$133,407▲ $29,594
Accounts Receivable-$34,587-
Land, Buildings, and Equipment, Net$5,701$7,086▲ $1,385
Prepaid Expenses and Deferred Charges$3,805$4,896▲ $1,091
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Investments in Publicly Traded Securities-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Total Assets$423,996$562,228▲ $138,232
Other Assets Total$29,605$33,585▲ $3,980
Liabilities
Grants Payable$80,000$40,000▼ $40,000
Accounts Payable and Accrued Expenses$3,440$15,051▲ $11,611
Unsecured Notes Loans Payable$5,704$4,423▼ $1,281
Total Liabilities$89,144$59,474▼ $29,670
Net Assets / Fund Balance
Unrestricted Net Assets$332,277$500,179▲ $167,902
Temporarily Rstr Net Assets$2,575$2,575→ $0
Total Net Assets Fund Balance$334,852$502,754▲ $167,902
Total Liabilities and Net Assets / Fund Balance$423,996$562,228▲ $138,232

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$7,086$1,945$9,031
Other Assets Org$33,585--

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2013$29,605-▲ $4,246-$33,585
2012$26,272-▲ $3,588-$29,605
2011$26,296-▲ $111-$26,272
2010$23,561-▲ $2,856-$26,296
2009$5,000$4,885-$102$23,561
Compensation and Service Providers
Top Officer Pay49th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Susan LomasPresidentFT$673$673

Board Members and Trustees

NameTitle
Nick AssendelftVice President
Kurt KoesterDirector
MEGAN O'BOYLEDirector
Terri DuttsDirector
Veronica FrunziSecretary
Priscilla HackstadtTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$438,956
Program Service Revenue
$18,604
Investment Income
$2,786
Other Revenue
$-7,962
All Other Contributions
$421,045
Change in Net Assets
$167,902

Audited Revenue Reconciliation

Revenue per Audited Statements
$452,384
Revenue Not Reported on Form 990
$5,068
Total Revenue per Audited Statements
$457,452
Total Revenue per Form 990
$452,384
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$158,326
Salaries, Compensation, and Employee Benefits$118,403
Total Fundraising Expense$32,288
Grants and Similar Amounts Paid$7,753
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$21,784$27,688$17,044$66,516
Information Technology$45,062$1,797$1,440$48,299
Current Officers, Directors, Trustees, and Key Employees$16,991$23,549$2,804$43,344
Conferences and Meetings$33,866$39$238$34,143
Fees for Services Other$10,900$6,375$1,000$18,275
Office Expenses$2,935$12,398$531$15,864
Occupancy$4,615$6,352$2,364$13,331
Advertising$5,181-$5,356$10,537
Travel$6,273$2,781-$9,054
Payroll Taxes$2,966$4,146$1,431$8,543
Foreign Grants$7,753--$7,753
Insurance-$3,697-$3,697
Fees for Services Accounting-$1,655-$1,655
Depreciation Depletion-$1,645-$1,645
Other Expenses$25$1,106$80$1,211
Interest-$615-$615
Total Functional Expenses$158,351$93,843$32,288$284,482

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$290,941
Expenses per Audited Statements$284,482
Total Expenses per Form 990$284,482
Expenses Not Reported on Form 990$6,459
International Activity

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$28,028
Fundraising Gross Income$18,675
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Event 1$36,586$18,675-$18,675
Total Events$36,586$18,675$28,028$-9,353
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
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
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Line 11B: Form 990 Review Process

“Cpa prepares a draft of form 990 and distributes a copy to all board members, soliciting comments and questions. After the return is reviewed independently and revised, another copy is provided to all board members prior to final filing.”

Form 990, Part VI, Line 12C: Explanation of Monitoring and Enforcement of Conflicts

“Board members, committe chairs, and other key volunteers are required to sign an annual statement acknowledging they have received a written conflict of interest policy and are in compliance with the policy.”

Form 990, Part VI, Line 19: Other Organization Documents Publicly Available

“No documents available to the public.”

Filing and Contact Details

Filer

EIN
04-3673104
Phone
9414858000

Signing Officer

Name
Barbara Cruz
Title
Executive Director
Signed
2014-05-12
Discuss with paid preparer
Yes

Organization Details

Formed
2002
Legal Domicile
Fl
Voting Board Members
7
Independent Board Members
6
Employees
5
Volunteers
300

Preparer

Preparer
Thomas E Whittaker
Phone
9414935299
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This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/ProgSrvcAccomActy2Grp/Desc0REGISTRY & STANFORD BIO-SAMPLE PROJECT - PMSF CONTINUED TO ENROLL PATIENT FAMILIES IN THE PHELAN-MCDERMID SYNDROME INTERNATIONAL REGISTRY (PMSIR). IN CONJUNCTION WITH STANFORD, PMSF HELPED TO OBTAIN PATIENT DATA FOR THE CHARACTERIZATION OF PATIENTS' BIO-SAMPLES IN THE NIMH HUMAN GENETICS INITIATIVE (HGI). ON BEHALF OF STANFORD, PMSF CONTACTED 54 FAMILIES OF INDIVIDUALS DIAGNOSED WITH PMS, WHO DONATED BIO-SAMPLES DURING THE 2012 CONFERENCE. PMSF COORDINATED THE RELEASE OF MEDICAL RECORDS OF THESE INDIVIDUALS TO STANFORD AND PMSIR VIA MEDICAL RECORD RELEASE AUTHORIZATION FORMS. THIS DATA IS AVAILABLE TO RESEARCHERS OBTAINING BIO-SAMPLES THROUGH THE HGI. THIS JOINT VENTURE, ENABLED US TO UPDATE MANY OF THE RECORDS IN OUR REGISTRY AND REACH OUT TO NEW FAMILIES, INCREASING THE CURRENT DATA IN THE PMSIR.
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IRS990/ProgSrvcAccomActy3Grp/Desc0RESEARCH SUPPORT SCIENTIFIC MEETING - IN 2013, PMSF SPONSORED A SCIENTIFIC MEETING AT THE BANBURY CENTER AT COLD SPRING HARBOR LAB, WHERE EXPERTS IN THE FIELD OF PMS RESEARCH WERE ENCOURAGED TO DISCUSS UNPUBLISHED DATA AND SHARE THEIR CANDID THOUGHTS ON THE MOST PROMISING FUTURE AVENUES OF RESEARCH. SOME OF THE TOPICS INCLUDED WERE NATURAL HISTORY STUDIES, CLINICAL TRIAL DESIGN, AND THERAPEUTIC TARGET IDENTIFICATION IN MODEL SYSTEMS. THOUGHT LEADERS FROM INDUSTRY AND OTHER FOUNDATIONS JOINED RESEARCHERS WITH EXPERTISE IN CLINICAL RESEARCH AND CLINICAL TRIALS, ALONG WITH BASIC SCIENTISTS STUDYING PMS, FRAGILE X, TUBEROUS SCLEROSIS COMPLEX, AND RETT SYNDROME, TO OPENLY DISCUSS THE CHALLENGES THAT LIE AHEAD AND THE STRATEGIES TO OVERCOME THEM.
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Document Assets

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Filings

Displayed year

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

Open filing
Assets
$562,228
Liabilities
$59,474
Net assets
$502,754
Revenue
$452,384
Expenses
$284,482
Net income
$167,902
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Detailed filing. Detailed filing data is available for this year.$2.22$0.15$2.07$1.25$1.08$0.16
2024Detailed filing. Detailed filing data is available for this year.$2.11$0.21$1.90$1.31$1.44$0.13
2023Detailed filing. Detailed filing data is available for this year.$2.24$0.22$2.03$1.06$1.10$0.04
2022Detailed filing. Detailed filing data is available for this year.$2.11$0.06$2.05$0.85$0.72$0.14
2021Detailed filing. Detailed filing data is available for this year.$1.94$0.02$1.92$0.90$0.50$0.40
2020Detailed filing. Detailed filing data is available for this year.$1.64$0.12$1.52$0.56$0.46$0.10
2019Detailed filing. Detailed filing data is available for this year.$1.43$0.02$1.41$0.66$0.58$0.08
2018Detailed filing. Detailed filing data is available for this year.$1.42$0.09$1.33$1.20$0.90$0.30
2017Detailed filing. Detailed filing data is available for this year.$1.20$0.16$1.03$1.16$1.12$0.04
2016Detailed filing. Detailed filing data is available for this year.$1.19$0.20$0.99$1.27$1.05$0.23
2015Detailed filing. Detailed filing data is available for this year.$1.05$0.28$0.76$1.14$0.93$0.21
2014Detailed filing. Detailed filing data is available for this year.$0.83$0.28$0.55$0.91$0.86$0.05
2013Detailed filing. Detailed filing data is available for this year.$0.56$0.06$0.50$0.45$0.28$0.17
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.42$0.09$0.33$0.41
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.42$0.06$0.36$0.37