Civic Intelligence

Facioscapulohumeral Society

990 • Fiscal year 2017 • EIN 52-1762747

Jan 01, 2017 to Dec 31, 2017 • Filed on Apr 17, 2018

Organization ProfileWWW.FSHSOCIETY.ORG

View Organization Page

450 Bedford StreetLexington, MA 02420

(781) 301-6060

Siviq Scores

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

Liabilities / Assets

62nd percentile

0.19x

Higher debt load relative to assets than 62% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Liabilities / Revenue

68th percentile

0.26x

Higher debt load relative to revenue than 68% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Net Margin

82nd percentile

26%

Higher net margin than 82% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Top Officer Pay

80th percentile

$134,938

Higher top officer pay than 80% of similar nonprofits.

Top officer pay equals 4.1% of source-year revenue.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Asset Growth

87th percentile

34%

Faster asset growth than 87% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2016 to 2017

Revenue Growth

88th percentile

57%

Faster revenue growth than 88% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2016 to 2017

Balance Sheet
Liabilities / Assets62nd percentile

Assets

Up

$4,482,129

Up $1,133,126 (+34%) from 2016

Net Assets

Up

$3,636,312

Up $993,345 (+38%) from 2016

Liabilities

Up

$845,817

Up $139,781 (+20%) from 2016

Revenue And Expenses
Liabilities / Revenue68th percentileNet Margin82nd percentile

Revenue

Up

$3,253,712

Up $1,183,061 (+57%) from 2016

Expenses

Up

$2,423,238

Up $31,284 (+1.3%) from 2016

Net Income

Up

$830,474

Up $1,151,777 (+358%) from 2016

Historical Trend

Balance Sheet Trend

Asset Growth87th percentile

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

$8.0M$6.0M$4.0M$2.0M$0Assets 2010: $1,527,570Liabilities 2010: $3,893Net Assets 2010: $1,523,6772010Assets 2011: $1,738,898Liabilities 2011: $1,304Net Assets 2011: $1,737,5942011Assets 2012: $1,947,245Liabilities 2012: $17,208Net Assets 2012: $1,930,0372012Assets 2013: $2,508,982Liabilities 2013: $141,407Net Assets 2013: $2,367,5752013Assets 2014: $3,066,846Liabilities 2014: $322,961Net Assets 2014: $2,743,8852014Assets 2015: $3,367,536Liabilities 2015: $425,302Net Assets 2015: $2,942,2342015Assets 2016: $3,349,003Liabilities 2016: $706,036Net Assets 2016: $2,642,9672016Assets 2017: $4,482,129Liabilities 2017: $845,817Net Assets 2017: $3,636,3122017Assets 2018: $3,957,807Liabilities 2018: $530,453Net Assets 2018: $3,427,3542018Assets 2019: $6,492,466Liabilities 2019: $775,028Net Assets 2019: $5,717,4382019Assets 2020: $5,835,495Liabilities 2020: $301,823Net Assets 2020: $5,533,6722020Assets 2021: $7,638,819Liabilities 2021: $1,286,409Net Assets 2021: $6,352,4102021Assets 2022: $6,079,315Liabilities 2022: $1,400,698Net Assets 2022: $4,678,6172022Assets 2023: $6,421,254Liabilities 2023: $1,406,571Net Assets 2023: $5,014,6832023Assets 2024: $5,592,191Liabilities 2024: $893,399Net Assets 2024: $4,698,7922024

Highlighted filing

2017

Assets$4,482,129
Liabilities$845,817
Net Assets$3,636,312
Open 2017 Filing

Operations Trend

Revenue Growth88th percentile

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

$6.0M$4.0M$2.0M$0-$2.0MExpenses 2010: $884,0882010Expenses 2011: $872,4882011Expenses 2012: $1,269,6132012Revenue 2013: $1,672,747Expenses 2013: $1,309,745Net Income 2013: $363,0022013Revenue 2014: $1,946,461Expenses 2014: $1,563,643Net Income 2014: $382,8182014Revenue 2015: $2,027,670Expenses 2015: $1,796,357Net Income 2015: $231,3132015Revenue 2016: $2,070,651Expenses 2016: $2,391,954Net Income 2016: -$321,3032016Revenue 2017: $3,253,712Expenses 2017: $2,423,238Net Income 2017: $830,4742017Revenue 2018: $2,701,749Expenses 2018: $2,672,270Net Income 2018: $29,4792018Revenue 2019: $5,268,516Expenses 2019: $3,240,360Net Income 2019: $2,028,1562019Revenue 2020: $2,627,205Expenses 2020: $2,864,804Net Income 2020: -$237,5992020Revenue 2021: $5,488,220Expenses 2021: $4,615,323Net Income 2021: $872,8972021Revenue 2022: $3,508,920Expenses 2022: $4,712,959Net Income 2022: -$1,204,0392022Revenue 2023: $4,455,414Expenses 2023: $4,311,066Net Income 2023: $144,3482023Revenue 2024: $4,942,571Expenses 2024: $5,475,276Net Income 2024: -$532,7052024

Highlighted filing

2017

Revenue$3,253,712
Expenses$2,423,238
Net Income$830,474
Open 2017 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2017 to Dec 31, 2017
Signed
Apr 17, 2018
Return Version
2017v2.2
Gross Receipts
$3,519,497
Mission and Program Overview

Mission

To increase awareness, understanding, and conduct research and education on the muscular disorder, facioscapulohumeral muscular dystrophy (fshd). Fshd is the most prevalent form of muscular dystrophy affecting men, women and children.

Increase awareness, understanding of and conduct research on facioscapulohumeral muscular dystrophy.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$954,883$2,168,221▲ $1,213,338
Savings and Temporary Cash Investments$2,295,337$1,993,351▼ $301,986
Pledges and Grants Receivable$46,000$240,000▲ $194,000
Prepaid Expenses and Deferred Charges$15,250$29,612▲ $14,362
Land, Buildings, and Equipment, Net$23,556$17,858▼ $5,698
Total Assets$3,349,003$4,482,129▲ $1,133,126
Other Assets Total$13,977$33,087▲ $19,110
Liabilities
Grants Payable$493,751$771,327▲ $277,576
Accounts Payable and Accrued Expenses$84,918$45,390▼ $39,528
Other Liabilities$127,367$29,100▼ $98,267
Total Liabilities$706,036$845,817▲ $139,781
Net Assets / Fund Balance
Permanently Rstr Net Assets$928,079$1,860,316▲ $932,237
Unrestricted Net Assets$1,651,540$1,279,075▼ $372,465
Temporarily Rstr Net Assets$63,348$496,921▲ $433,573
Total Net Assets Fund Balance$2,642,967$3,636,312▲ $993,345
Total Liabilities and Net Assets / Fund Balance$3,349,003$4,482,129▲ $1,133,126

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$13,322$10,658$23,980
Leasehold Improvements$4,536$2,564$7,100

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2017$959,883$932,237▲ $260,501$46,400$2,106,221
2016$85,835$854,179▲ $55,869$36,000$959,883
2015$89,659-▲ $176$4,000$85,835
2014$87,915-▲ $6,144$4,400$89,659
2013$83,041$150▲ $8,324$3,600$87,915
Compensation and Service Providers
Top Officer Pay80th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
June KinoshitaCspo (chief Strateg. Program Officer)FT$129,968$4,970$134,938
Lisa SchimmelCFOPT$96,415$3,731$100,146
Daniel Paul PerezFormer CEO & PresidentPT$81,318$12,161$93,479
Mark StoneCEO & PresidentFT$61,153$3,402$64,555

Board Members and Trustees

NameTitle
William R Lewis Sr MdChairman
Howard L Chabner JdVice Chairman
James a Chin SrVice Chairman
Carden WyckoffBoard Member
Carol S Birnbaum MdBoard Member
Christine FordBoard Member
David J Glass MdBoard Member
George Pollock JrBoard Member
Lee Frank Kolakowski PhdBoard Member
Linda Laurello-bambarger MbaBoard Member
Louis M Kunkel PhdBoard Member
Michelle Helen Mackay MaBoard Member
Nancy K PaytonBoard Member
Neil Andrew Solomon Md FacpBoard Member
Stuart LaiBoard Member
Thomas F RuekertBoard Member
Wendy ShackBoard Member
William R Lewis Iii MdBoard Member
Amy Z Bekier MaSecretary
Ellen K Hannan MbaTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$3,031,111
Program Service Revenue
$29,714
Investment Income
$98,368
Other Revenue
$94,519
All Other Contributions
$2,929,274
Change in Net Assets
$830,474

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
No
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Securities Publicly Traded15$1,070,693Fair Market Value (FMV)
Total Noncash Contributions15$1,070,693-

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,253,712
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$330,452
Total Revenue per Audited Statements
$3,584,164
Total Revenue per Form 990
$3,253,712
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$1,365,489
Salaries, Compensation, and Employee Benefits$644,635
Other Expenses$413,114
Total Fundraising Expense$279,903
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$950,022--$950,022
Foreign Grants$415,467--$415,467
Other Salaries and Wages$151,891$45,514$118,762$316,167
Current Officers, Directors, Trustees, and Key Employees$129,319$117,731$11,129$258,179
Fees for Services Other-$64,473$28,105$92,578
Travel$26,008$4,234$20,131$50,373
Payroll Taxes$20,759$12,253$9,972$42,984
Information Technology$18,325$10,817$8,803$37,945
Occupancy$15,955$9,448$7,664$33,067
Other Employee Benefits$9,179$8,264$9,862$27,305
Office Expenses$12,986$7,668$6,238$26,892
Fees for Services Legal-$17,310$716$18,026
Fees for Services Accounting-$13,650-$13,650
Conferences and Meetings$10,540--$10,540
Depreciation Depletion-$9,274-$9,274
Other Expenses$8,466$3,791$16,996$8,466
All Other Expenses$239$6,414-$6,653
Insurance-$5,447-$5,447
Advertising$547$380-$927
Total Functional Expenses$1,806,667$336,668$279,903$2,423,238

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,590,819
Expenses per Audited Statements$2,423,238
Total Expenses per Form 990$2,423,238
Expenses Not Reported on Form 990$167,581
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of NevadaReno, NV501(c)(3)Stryka-001 Treatment in the Fshd-like Mouse Model$190,000
CHILDREN'S RESEARCH INSTITUTESilver Spring, MD501(c)(3)Developing Lna-based Therapy for Fshd Muscular Dystrophy$179,104
New York University Medical SchoolBoston, MA501(c)(3)Transcriptional and Epigenetic Regulation of D4z4 at Chromosome 4q35.2$125,000
University of MinnesotaMinneapolis, MN501(c)(3)Skeletal Muscle Degeneration in Idux4pa Mouse Model$100,000
Johns Hopkins UniversityBaltimore, MD501(c)(3)DERIVATION OF MULTIPLE PAX7: GFP FSHD-SPECIFIC HUMAN IPSC LINES$94,696
BOSTON CHILDREN'S HOSPITALBoston, MA501(c)(3)A Genome-wide Crispr Knock-out Strategy to Identify Modifiers of Fshd$75,860
National Disease Research InterchangePhiladelphia, PA501(c)(3)Ndri Tissue Procurement Project$64,702
Boston UniversityBoston, MA501(c)(3)Inhibited Protein Turnover and Tdp-43 Aggregation in Fshd Pathogenesis$58,920
Fred Hutchinson Cancer Research CenterSeattle, WA501(c)(3)Determining the Effectiveness of Increased Smchd1 Expression to Suppress Dux4 in Fshd Muscle Cells and Model Mice$53,520
University of RochesterRochester, NY501(c)(3)Optimizing the Utility of the National Registry for Fshd Research and Trial Recruitment$5,720
BOSTON CHILDREN'S HOSPITALBoston, MA501(c)(3)Exome Sequencing in Patients With Severe Visual Loss Due to Retinal Vascular Disease Who Are From a Family With Mild Fshd1$2,500

International Summary

Offices
0
Employees
0
Spending
$415,467

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

International Activities

RegionActivityServicesOfficesEmployeesSpending
Europe (including Iceland & Greenland) - Albania, Andorra, Austria, BelgiumGrantsN/a00$415,467
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$55,986
Fundraising Gross Income$45,421
Gaming Gross Income$2,366
Gaming Direct Expenses$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
San Francisco Concert$61,394$23,194$22,662$532
Colorado Walk and Roll$32,035$9,987$5,598$4,389
Total Events$129,771$45,421$55,986$-10,565
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Long-term Grants Payable$29,100
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
Yes
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
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, Section A, Line 2

“William r. Lewis md, chairman, is the father of william r. Lewis iii md, board member. Board members james chin and christine ford are brother-in-law and sister-in-law. Board members neil solomon and carol birnbaum are brother-in-law and sister-in-law.”

Form 990, Part VI, Section A, Line 4

“Effective september 19, 2017, the organization approved amended bylaws. The bylaws were primarily updated to clarify the number of bod members, both voting and non-voting members.”

Form 990, Part VI, Section A, Line 6

“Per the organization's by-laws there shall be one class of members of the corporation, which class shall consist of individuals and entities who accept the goals and purpose of the corporation, have paid any dues or fees as established by the board of directors, and have met all other requirements of membership, if any, established by the board of directors. Members, as such, shall have no right to vote on any matter regarding the corporation.”

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

“The board of directors reviews and approves the form 990 prior to its filing. The form 990 was then authorized and signed by the organization's president & ceo.”

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

“The board of directors requires an annual declaration from all board members and senior management as to the existence and disclosure of any potential conflicts of interest. The board members sign a disclosure statement. Any potential conflicts are discussed by the dis-interested board members, while the party in potential conflict is required to leave the room. Board meeting minutes will document the discussion and decision making process. In the event of a potential conflict, procedures to obtain competitive bids and diligence on fair market value will be established.”

Form 990, Part VI, Section B, Line 15

“Fsh society's executive compensation program is administered by the board of directors. The board is responsible for establishing and maintaining a competitive compensation program for the key executives of the organization. The board meets as needed to review the compensation program and make recommendations for any changes, as appropriate. A performance evaluation is conducted and reviewed each year and is intended to ensure that the compensation program falls within a reasonable range of competitive practices for comparable positions among similarly situated organizations. Following this review, the board reviews and approves, for selected key executives, base salaries and annual incentive opportunity adjustments, and objectives and goals forth-upcoming year's annual incentive plan.”

Form 990, Part VI, Section C, Line 19

“Upon request, available on organization's website and through guidestar website.”

Filing and Contact Details

Filer

Filer Name
Facioscapulohumeral Society
EIN
52-1762747
Phone
7813016060
Address
450 BEDFORD STREET, LEXINGTON, MA 02420
Doing Business As
Fsh Society

Signing Officer

Name
Mark Stone
Title
CEO & President
Phone
7813016060
Signed
2018-04-17
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Mark Stone
Formed
1991
Legal Domicile
Dc
Voting Board Members
20
Independent Board Members
20
Employees
7
Volunteers
100

Preparer

Firm
Smith Sullivan & Brown Pc
Address
80 FLANDERS ROAD - SUITE 200, WESTBOROUGH, MA 01581
Preparer
Maureen L Sullivan CPA
Phone
5088717178
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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/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd19X
IRS990/Form990PartVIISectionAGrp/OfficerInd0X
IRS990/Form990PartVIISectionAGrp/OfficerInd1X
IRS990/Form990PartVIISectionAGrp/OfficerInd2X
IRS990/Form990PartVIISectionAGrp/OfficerInd3X
IRS990/Form990PartVIISectionAGrp/OfficerInd4X
IRS990/Form990PartVIISectionAGrp/OfficerInd5X
IRS990/Form990PartVIISectionAGrp/OfficerInd6X
IRS990/Form990PartVIISectionAGrp/OfficerInd7X
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt00
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt10
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt20
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt30
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt40
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt50
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt60
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt70
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt80
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt90
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt100
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt110
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt120
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt130
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt140
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt150
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt160
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt170
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt180
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt190
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt203402
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt213731
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt2212161
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt234970
IRS990/Form990PartVIISectionAGrp/PersonNm0WILLIAM R LEWIS SR MD
IRS990/Form990PartVIISectionAGrp/PersonNm1HOWARD L CHABNER JD
IRS990/Form990PartVIISectionAGrp/PersonNm2JAMES A CHIN SR
IRS990/Form990PartVIISectionAGrp/PersonNm3ELLEN K HANNAN MBA
IRS990/Form990PartVIISectionAGrp/PersonNm4CAROL S BIRNBAUM MD
IRS990/Form990PartVIISectionAGrp/PersonNm5AMY Z BEKIER MA
IRS990/Form990PartVIISectionAGrp/PersonNm6DAVID J GLASS MD
IRS990/Form990PartVIISectionAGrp/PersonNm7STUART LAI
IRS990/Form990PartVIISectionAGrp/PersonNm8LOUIS M KUNKEL PHD
IRS990/Form990PartVIISectionAGrp/PersonNm9NANCY K PAYTON
IRS990/Form990PartVIISectionAGrp/PersonNm10WILLIAM R LEWIS III MD
IRS990/Form990PartVIISectionAGrp/PersonNm11MICHELLE HELEN MACKAY MA
IRS990/Form990PartVIISectionAGrp/PersonNm12WENDY SHACK
IRS990/Form990PartVIISectionAGrp/PersonNm13LEE FRANK KOLAKOWSKI PHD
IRS990/Form990PartVIISectionAGrp/PersonNm14LINDA LAURELLO-BAMBARGER MBA
IRS990/Form990PartVIISectionAGrp/PersonNm15CHRISTINE FORD
IRS990/Form990PartVIISectionAGrp/PersonNm16GEORGE POLLOCK JR
IRS990/Form990PartVIISectionAGrp/PersonNm17THOMAS F RUEKERT
IRS990/Form990PartVIISectionAGrp/PersonNm18NEIL ANDREW SOLOMON MD FACP
IRS990/Form990PartVIISectionAGrp/PersonNm19CARDEN WYCKOFF
IRS990/Form990PartVIISectionAGrp/PersonNm20MARK STONE
IRS990/Form990PartVIISectionAGrp/PersonNm21LISA SCHIMMEL
IRS990/Form990PartVIISectionAGrp/PersonNm22DANIEL PAUL PEREZ
IRS990/Form990PartVIISectionAGrp/PersonNm23JUNE KINOSHITA
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt100
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt110
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt120
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt130
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt140
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt150
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt160
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt170
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt180
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt190
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt2061153
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt2196415
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt2281318
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt23129968
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt100
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt110
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt120
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt130
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt140
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt150
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt160
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt170
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt180
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt190
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt200
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt210
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt220
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt230
IRS990/Form990PartVIISectionAGrp/TitleTxt0CHAIRMAN
IRS990/Form990PartVIISectionAGrp/TitleTxt1VICE CHAIRMAN
IRS990/Form990PartVIISectionAGrp/TitleTxt2VICE CHAIRMAN
IRS990/Form990PartVIISectionAGrp/TitleTxt3TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt4BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt5SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt8BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt9BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt10BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt11BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt12BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt13BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt14BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt15BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt16BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt17BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt18BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt19BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt20CEO & PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt21CFO
IRS990/Form990PartVIISectionAGrp/TitleTxt22FORMER CEO & PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt23CSPO (CHIEF STRATEG. PROGRAM OFFICER)
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01991
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd01
IRS990/FundraisingAmt084350
IRS990/FundraisingDirectExpensesAmt055986
IRS990/FundraisingGrossIncomeAmt045421
IRS990/GainOrLossGrp/SecuritiesAmt0-15685
IRS990/GamingActivitiesInd00
IRS990/GamingDirectExpensesAmt00
IRS990/GamingGrossIncomeAmt02366
IRS990/GoverningBodyVotingMembersCnt020
IRS990/GrantAmt01365489
IRS990/GrantsPayableGrp/BOYAmt0493751
IRS990/GrantsPayableGrp/EOYAmt0771327
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt0950022
IRS990/GrantsToDomesticOrgsGrp/TotalAmt0950022
IRS990/GrantsToIndividualsInd00
IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt0194114
IRS990/GrossReceiptsAmt03519497
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd00
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt020
IRS990/IndivRcvdGreaterThan100KCnt01
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt08803
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt010817
IRS990/InformationTechnologyGrp/ProgramServicesAmt018325
IRS990/InformationTechnologyGrp/TotalAmt037945
IRS990/InsuranceGrp/ManagementAndGeneralAmt05447
IRS990/InsuranceGrp/TotalAmt05447
IRS990/InvestmentIncomeGrp/ExclusionAmt0114053
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt0114053
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt0954883
IRS990/InvestmentsPubTradedSecGrp/EOYAmt02168221
IRS990/IRPDocumentCnt017
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt013222
IRS990/LandBldgEquipBasisNetGrp/BOYAmt023556
IRS990/LandBldgEquipBasisNetGrp/EOYAmt017858
IRS990/LandBldgEquipCostOrOtherBssAmt031080
IRS990/LegalDomicileStateCd0DC
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt0209799
IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd00
IRS990/LocalChaptersInd00
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd01
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0TO INCREASE AWARENESS, UNDERSTANDING, AND CONDUCT RESEARCH AND EDUCATION ON THE MUSCULAR DISORDER, FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD). FSHD IS THE MOST PREVALENT FORM OF MUSCULAR DYSTROPHY AFFECTING MEN, WOMEN AND CHILDREN.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd01
IRS990/NetAssetsOrFundBalancesBOYAmt02642967
IRS990/NetAssetsOrFundBalancesEOYAmt03636312
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt0-15685
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt0-15685
IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt0-10565
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt0-10565
IRS990/NetIncomeFromGamingGrp/ExclusionAmt02366
IRS990/NetIncomeFromGamingGrp/TotalRevenueColumnAmt02366
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0162871
IRS990/NoncashContributionsAmt01070693
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt07664
IRS990/OccupancyGrp/ManagementAndGeneralAmt09448
IRS990/OccupancyGrp/ProgramServicesAmt015955
IRS990/OccupancyGrp/TotalAmt033067
IRS990/OfficeExpensesGrp/FundraisingAmt06238
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt07668
IRS990/OfficeExpensesGrp/ProgramServicesAmt012986
IRS990/OfficeExpensesGrp/TotalAmt026892
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt013977
IRS990/OtherAssetsTotalGrp/EOYAmt033087
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt09862
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt08264
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt09179
IRS990/OtherEmployeeBenefitsGrp/TotalAmt027305
IRS990/OtherExpensesGrp/Desc0PRINTING
IRS990/OtherExpensesGrp/Desc1FUNDRAISING EXPENSES
IRS990/OtherExpensesGrp/Desc2BANK SERVICE CHARGES AN
IRS990/OtherExpensesGrp/Desc3SCIENTIFIC ADVISORY BOA
IRS990/OtherExpensesGrp/FundraisingAmt018469
IRS990/OtherExpensesGrp/FundraisingAmt123056
IRS990/OtherExpensesGrp/FundraisingAmt216996
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt03791
IRS990/OtherExpensesGrp/ProgramServicesAmt034780
IRS990/OtherExpensesGrp/ProgramServicesAmt12184
IRS990/OtherExpensesGrp/ProgramServicesAmt28466
IRS990/OtherExpensesGrp/TotalAmt053249
IRS990/OtherExpensesGrp/TotalAmt123056
IRS990/OtherExpensesGrp/TotalAmt222971
IRS990/OtherExpensesGrp/TotalAmt38466
IRS990/OtherLiabilitiesGrp/BOYAmt0127367
IRS990/OtherLiabilitiesGrp/EOYAmt029100
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/BusinessCd1900099
IRS990/OtherRevenueMiscGrp/Desc0RETURN OF GRANT FUNDS
IRS990/OtherRevenueMiscGrp/Desc1OTHER INCOME
IRS990/OtherRevenueMiscGrp/ExclusionAmt01848
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt0100870
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt0100870
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt11848
IRS990/OtherRevenueTotalAmt0102718
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt0118762
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt045514
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0151891
IRS990/OtherSalariesAndWagesGrp/TotalAmt0316167
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt09972
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt012253
IRS990/PayrollTaxesGrp/ProgramServicesAmt020759
IRS990/PayrollTaxesGrp/TotalAmt042984
IRS990/PermanentlyRstrNetAssetsGrp/BOYAmt0928079
IRS990/PermanentlyRstrNetAssetsGrp/EOYAmt01860316
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt046000
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt0240000
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt015250
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt029612
IRS990/PrincipalOfficerNm0MARK STONE
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099

Document Assets

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Filings

Displayed year

2017 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$4,482,129
Liabilities
$845,817
Net assets
$3,636,312
Revenue
$3,253,712
Expenses
$2,423,238
Net income
$830,474
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$5.59$0.89$4.70$4.94$5.48$0.53
2023Detailed filing. Detailed filing data is available for this year.$6.42$1.41$5.01$4.46$4.31$0.14
2022Detailed filing. Detailed filing data is available for this year.$6.08$1.40$4.68$3.51$4.71$1.20
2021Detailed filing. Detailed filing data is available for this year.$7.64$1.29$6.35$5.49$4.62$0.87
2020Detailed filing. Detailed filing data is available for this year.$5.84$0.30$5.53$2.63$2.86$0.24
2019Detailed filing. Detailed filing data is available for this year.$6.49$0.78$5.72$5.27$3.24$2.03
2018Detailed filing. Detailed filing data is available for this year.$3.96$0.53$3.43$2.70$2.67$0.03
2017Detailed filing. Detailed filing data is available for this year.$4.48$0.85$3.64$3.25$2.42$0.83
2016Detailed filing. Detailed filing data is available for this year.$3.35$0.71$2.64$2.07$2.39$0.32
2015Detailed filing. Detailed filing data is available for this year.$3.37$0.43$2.94$2.03$1.80$0.23
2014Detailed filing. Detailed filing data is available for this year.$3.07$0.32$2.74$1.95$1.56$0.38
2013Detailed filing. Detailed filing data is available for this year.$2.51$0.14$2.37$1.67$1.31$0.36
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.95$0.02$1.93$1.27
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.74$0.00$1.74$0.87
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.53$0.00$1.52$0.88