Civic Intelligence

Facioscapulohumeral Society

990 • Fiscal year 2018 • EIN 52-1762747

Jan 01, 2018 to Dec 31, 2018 • Filed on Apr 04, 2019

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

57th percentile

0.13x

Higher debt load relative to assets than 57% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2018

Liabilities / Revenue

64th percentile

0.20x

Higher debt load relative to revenue than 64% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2018

Net Margin

44th percentile

1.1%

Higher net margin than 44% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2018

Top Officer Pay

88th percentile

$180,507

Higher top officer pay than 88% of similar nonprofits.

Top officer pay equals 6.7% of source-year revenue.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2018

Asset Growth

12th percentile

-12%

Faster asset growth than 12% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2017 to 2018

Revenue Growth

16th percentile

-17%

Faster revenue growth than 16% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2017 to 2018

Balance Sheet
Liabilities / Assets57th percentile

Assets

Down

$3,957,807

Down $524,322 (-12%) from 2017

Net Assets

Down

$3,427,354

Down $208,958 (-5.7%) from 2017

Liabilities

Down

$530,453

Down $315,364 (-37%) from 2017

Revenue And Expenses
Liabilities / Revenue64th percentileNet Margin44th percentile

Revenue

Down

$2,701,749

Down $551,963 (-17%) from 2017

Expenses

Up

$2,672,270

Up $249,032 (+10%) from 2017

Net Income

Down

$29,479

Down $800,995 (-96%) from 2017

Historical Trend

Balance Sheet Trend

Asset Growth12th 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

2018

Assets$3,957,807
Liabilities$530,453
Net Assets$3,427,354
Open 2018 Filing

Operations Trend

Revenue Growth16th 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

2018

Revenue$2,701,749
Expenses$2,672,270
Net Income$29,479
Open 2018 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2018 to Dec 31, 2018
Signed
Apr 4, 2019
Return Version
2018v3.1
Gross Receipts
$3,157,625
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
Savings and Temporary Cash Investments$1,993,351$1,960,102▼ $33,249
Investments in Publicly Traded Securities$2,168,221$1,828,926▼ $339,295
Pledges and Grants Receivable$240,000$120,000▼ $120,000
Prepaid Expenses and Deferred Charges$29,612$32,086▲ $2,474
Land, Buildings, and Equipment, Net$17,858$12,216▼ $5,642
Total Assets$4,482,129$3,957,807▼ $524,322
Other Assets Total$33,087$4,477▼ $28,610
Liabilities
Grants Payable$771,327$329,048▼ $442,279
Other Liabilities$29,100$136,482▲ $107,382
Accounts Payable and Accrued Expenses$45,390$64,923▲ $19,533
Total Liabilities$845,817$530,453▼ $315,364
Net Assets / Fund Balance
Temporarily Rstr Net Assets$496,921$2,450,771▲ $1,953,850
Permanently Rstr Net Assets$1,860,316$0▼ $1,860,316
Unrestricted Net Assets$1,279,075$976,583▼ $302,492
Total Net Assets Fund Balance$3,636,312$3,427,354▼ $208,958
Total Liabilities and Net Assets / Fund Balance$4,482,129$3,957,807▼ $524,322

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$8,544$3,610$12,154
Equipment$1,468$6,508$7,976
Leasehold Improvements$2,204$4,896$7,100

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2018$2,106,221-▼ $4,045$2,102,176-
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
Compensation and Service Providers
Top Officer Pay88th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Mark StoneCEO & PresidentFT$163,437$17,070$180,507
June KinoshitaChief Strategic Programs OfficerFT$130,000$7,165$137,165
Lisa SchimmelCFOPT$101,428$5,680$107,108

Board Members and Trustees

NameTitle
James a Chin SrChairman
Howard L Chabner JdVice Chairman
Amy Z BekierBoard Member
Carden WyckoffBoard Member
David J Glass MdBoard Member
George Pollock JrBoard Member
Lee Frank Kolakowski PhdBoard Member
Linda LaurelloBoard Member
Louis M Kunkel PhdBoard Member
Marie MorrellBoard Member
Michelle Helen MackayBoard Member
Neil Andrew Solomon Md FacpBoard Member
Stuart LaiBoard Member
Thomas F RuekertBoard Member
William R Lewis Iii MdBoard Member
Carol S Birnbaum MdFormer Board Member
Nancy K PaytonFormer Board Member
Wendy ShackFormer Board Member
Christine FordSecretary
Ellen K HannanTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$2,344,902
Program Service Revenue
$194,965
Investment Income
$158,967
Other Revenue
$2,915
All Other Contributions
$2,076,568
Change in Net Assets
$29,479

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 Traded8$113,972Fair Market Value (FMV)
Total Noncash Contributions8$113,972-

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,701,749
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$-144,099
Total Revenue per Audited Statements
$2,557,650
Total Revenue per Form 990
$2,701,749
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$1,037,579
Salaries, Compensation, and Employee Benefits$878,259
Other Expenses$756,432
Total Fundraising Expense$370,662
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Foreign Grants$585,660--$585,660
Grants to Domestic Orgs$451,919--$451,919
Other Salaries and Wages$303,703$36,057$109,321$449,081
Current Officers, Directors, Trustees, and Key Employees$126,355$125,159$36,101$287,615
Conferences and Meetings$197,939--$197,939
Fees for Services Other$8,388$34,561$73,429$116,378
Travel$88,220$2,363$13,137$103,720
Other Employee Benefits$53,641$16,652$18,670$88,963
Information Technology$34,496$17,267$11,788$63,551
Payroll Taxes$30,739$11,395$10,466$52,600
Office Expenses$23,132$8,511$8,024$39,667
Occupancy$19,493$7,183$6,628$33,304
Fees for Services Legal$8,338$21,422-$29,760
Depreciation Depletion-$16,267-$16,267
Fees for Services Accounting-$14,200-$14,200
All Other Expenses$4,867-$2,923$7,790
Insurance-$7,119-$7,119
Other Expenses$3,302$6,178$15,920$6,178
Advertising$1,538--$1,538
Total Functional Expenses$1,974,137$327,471$370,662$2,672,270

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,766,608
Expenses per Audited Statements$2,672,270
Total Expenses per Form 990$2,672,270
Expenses Not Reported on Form 990$94,338
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of Kansas Medical CenterFairway, KS501(c)(3)Clinical Trials Research Network (ctrn) for Facioscapulohumeral Muscular Dystrophy (fshd)$133,254
BOSTON CHILDREN'S HOSPITALBoston, MA501(c)(3)The Role of Estrogen Receptors in Fshd-1 Mechanism$125,000
University of MinnesotaMinneapolis, MNState GovernmentDetermining the Therapeutic Potential of Pluripotent Stem Cell-derived Myogenic Progenitors in the Idux4pa Mouse Model$99,998
THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501(c)(3)Natural Micrornas as Potential Modifiers of Dux4 Toxicity$80,000
Ohio State University Medical Center Development & Alumni AffairsColumbus, OH501(c)(3)Fshd Research Fund$7,947
University of RochesterRochester, NY501(c)(3)Optimizing the Utility of the National Registry for Fshd Research and Trial Recruitmen$5,720

International Summary

Offices
0
Employees
0
Spending
$585,660

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
EuropeGrantsN/a00$585,660
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$59,913
Fundraising Gross Income$52,416
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Ghostly Gala$68,382$31,926$14,849$17,077
Peer to Peer Events$239,733$20,490$18,011$2,479
Total Events$308,115$52,416$59,913$-7,497
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$136,482
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

“Board members james chin and christine ford are brother-in-law and sister-in-law.”

Form 990, Part VI, Section A, Line 4

“Effective september 25, 2018, the organization approved amended by-laws. The by-laws were primarily amended to reflect the society's current governance structure.”

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

“The finance committee reviews and approves the financial statements and form 990. Copies of the form 990 and financial statements are made available to the board of directors for review before the 990 is filed.”

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 for the 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 a Stone
Title
CEO & President
Phone
7813016060
Signed
2019-04-04
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Mark a Stone
Formed
1991
Legal Domicile
Dc
Voting Board Members
17
Independent Board Members
17
Employees
8
Volunteers
813

Preparer

Firm
Smith Sullivan & Brown Pc
Address
80 FLANDERS ROAD - SUITE 200, WESTBOROUGH, MA 01581
Preparer
Sandra M Brown 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/OtherCompensationAmt130
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt140
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt150
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt160
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt170
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt180
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt190
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt2017070
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt215680
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt227165
IRS990/Form990PartVIISectionAGrp/PersonNm0JAMES A CHIN SR
IRS990/Form990PartVIISectionAGrp/PersonNm1HOWARD L CHABNER JD
IRS990/Form990PartVIISectionAGrp/PersonNm2CHRISTINE FORD
IRS990/Form990PartVIISectionAGrp/PersonNm3ELLEN K HANNAN
IRS990/Form990PartVIISectionAGrp/PersonNm4CAROL S BIRNBAUM MD
IRS990/Form990PartVIISectionAGrp/PersonNm5AMY Z BEKIER
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
IRS990/Form990PartVIISectionAGrp/PersonNm12WENDY SHACK
IRS990/Form990PartVIISectionAGrp/PersonNm13LEE FRANK KOLAKOWSKI PHD
IRS990/Form990PartVIISectionAGrp/PersonNm14LINDA LAURELLO
IRS990/Form990PartVIISectionAGrp/PersonNm15GEORGE POLLOCK JR
IRS990/Form990PartVIISectionAGrp/PersonNm16THOMAS F RUEKERT
IRS990/Form990PartVIISectionAGrp/PersonNm17NEIL ANDREW SOLOMON MD FACP
IRS990/Form990PartVIISectionAGrp/PersonNm18CARDEN WYCKOFF
IRS990/Form990PartVIISectionAGrp/PersonNm19MARIE MORRELL
IRS990/Form990PartVIISectionAGrp/PersonNm20MARK STONE
IRS990/Form990PartVIISectionAGrp/PersonNm21LISA SCHIMMEL
IRS990/Form990PartVIISectionAGrp/PersonNm22JUNE 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/ReportableCompFromOrgAmt20163437
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt21101428
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt22130000
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/TitleTxt0CHAIRMAN
IRS990/Form990PartVIISectionAGrp/TitleTxt1VICE CHAIRMAN
IRS990/Form990PartVIISectionAGrp/TitleTxt2SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt3TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt4FORMER BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt5BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt8BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt9FORMER BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt10BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt11BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt12FORMER BOARD 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/TitleTxt22CHIEF STRATEGIC PROGRAMS OFFICER
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01991
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd01
IRS990/FundraisingAmt0255699
IRS990/FundraisingDirectExpensesAmt059913
IRS990/FundraisingGrossIncomeAmt052416
IRS990/GainOrLossGrp/SecuritiesAmt021601
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt017
IRS990/GrantAmt01037579
IRS990/GrantsPayableGrp/BOYAmt0771327
IRS990/GrantsPayableGrp/EOYAmt0329048
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt0451919
IRS990/GrantsToDomesticOrgsGrp/TotalAmt0451919
IRS990/GrantsToIndividualsInd00
IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt0417564
IRS990/GrossReceiptsAmt03157625
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd00
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt017
IRS990/IndivRcvdGreaterThan100KCnt03
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt011788
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt017267
IRS990/InformationTechnologyGrp/ProgramServicesAmt034496
IRS990/InformationTechnologyGrp/TotalAmt063551
IRS990/InsuranceGrp/ManagementAndGeneralAmt07119
IRS990/InsuranceGrp/TotalAmt07119
IRS990/InvestmentIncomeGrp/ExclusionAmt0137366
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt0137366
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt02168221
IRS990/InvestmentsPubTradedSecGrp/EOYAmt01828926
IRS990/IRPDocumentCnt026
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt015014
IRS990/LandBldgEquipBasisNetGrp/BOYAmt017858
IRS990/LandBldgEquipBasisNetGrp/EOYAmt012216
IRS990/LandBldgEquipCostOrOtherBssAmt027230
IRS990/LegalDomicileStateCd0DC
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt0395963
IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd00
IRS990/LocalChaptersInd01
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd00
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0TO INCREASE AWARENESS, UNDERSTANDING OF, AND CONDUCT RESEARCH ON FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd01
IRS990/NetAssetsOrFundBalancesBOYAmt03636312
IRS990/NetAssetsOrFundBalancesEOYAmt03427354
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt021601
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt021601
IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt0-7497
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt0-7497
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0-238437
IRS990/NoncashContributionsAmt0113972
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt06628
IRS990/OccupancyGrp/ManagementAndGeneralAmt07183
IRS990/OccupancyGrp/ProgramServicesAmt019493
IRS990/OccupancyGrp/TotalAmt033304
IRS990/OfficeExpensesGrp/FundraisingAmt08024
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt08511
IRS990/OfficeExpensesGrp/ProgramServicesAmt023132
IRS990/OfficeExpensesGrp/TotalAmt039667
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt033087
IRS990/OtherAssetsTotalGrp/EOYAmt04477
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt018670
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt016652
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt053641
IRS990/OtherEmployeeBenefitsGrp/TotalAmt088963
IRS990/OtherExpensesGrp/Desc0PRINTING
IRS990/OtherExpensesGrp/Desc1BANK SERVICE CHARGES AN
IRS990/OtherExpensesGrp/Desc2FUNDRAISING EXPENSES
IRS990/OtherExpensesGrp/Desc3DIRECTORS EXPENSES
IRS990/OtherExpensesGrp/FundraisingAmt035038
IRS990/OtherExpensesGrp/FundraisingAmt129217
IRS990/OtherExpensesGrp/FundraisingAmt215920
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt03137
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt16178
IRS990/OtherExpensesGrp/ProgramServicesAmt032407
IRS990/OtherExpensesGrp/ProgramServicesAmt13302
IRS990/OtherExpensesGrp/TotalAmt067445
IRS990/OtherExpensesGrp/TotalAmt135656
IRS990/OtherExpensesGrp/TotalAmt215920
IRS990/OtherExpensesGrp/TotalAmt36178
IRS990/OtherLiabilitiesGrp/BOYAmt029100
IRS990/OtherLiabilitiesGrp/EOYAmt0136482
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/BusinessCd1900099
IRS990/OtherRevenueMiscGrp/BusinessCd2900099
IRS990/OtherRevenueMiscGrp/Desc0RETURN OF GRANT FUNDS
IRS990/OtherRevenueMiscGrp/Desc1OTHER INCOME
IRS990/OtherRevenueMiscGrp/Desc2IMPAIRMENT LOSS ON INT
IRS990/OtherRevenueMiscGrp/ExclusionAmt0591
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt027805
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt1-17984
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt027805
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt1591
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt2-17984
IRS990/OtherRevenueTotalAmt010412
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt0109321
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt036057
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0303703
IRS990/OtherSalariesAndWagesGrp/TotalAmt0449081
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt010466
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt011395
IRS990/PayrollTaxesGrp/ProgramServicesAmt030739
IRS990/PayrollTaxesGrp/TotalAmt052600
IRS990/PermanentlyRstrNetAssetsGrp/BOYAmt01860316
IRS990/PermanentlyRstrNetAssetsGrp/EOYAmt00
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt0240000
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt0120000
IRS990/PoliciesReferenceChaptersInd01
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt029612
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt032086
IRS990/PrincipalOfficerNm0MARK A STONE
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/BusinessCd1900099
IRS990/ProgramServiceRevenueGrp/BusinessCd2900099
IRS990/ProgramServiceRevenueGrp/Desc0CORPORATE SPONSORSHIPS
IRS990/ProgramServiceRevenueGrp/Desc1PATIENT MEETING REGIST
IRS990/ProgramServiceRevenueGrp/Desc2CORPORATE PARTNERSHIPS

Document Assets

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Filings

Displayed year

2018 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$3,957,807
Liabilities
$530,453
Net assets
$3,427,354
Revenue
$2,701,749
Expenses
$2,672,270
Net income
$29,479
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