Civic Intelligence

Facioscapulohumeral Society

990 • Fiscal year 2019 • EIN 52-1762747

Jan 01, 2019 to Dec 31, 2019 • Filed on Apr 02, 2020

Organization ProfileWWW.FSHDSOCIETY.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

46th percentile

0.12x

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

2019 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2019

Liabilities / Revenue

48th percentile

0.15x

Higher debt load relative to revenue than 48% of similar nonprofits.

2019 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2019

Net Margin

87th percentile

38%

Higher net margin than 87% of similar nonprofits.

2019 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2019

Top Officer Pay

80th percentile

$224,881

Higher top officer pay than 80% of similar nonprofits.

Top officer pay equals 4.3% of source-year revenue.

2019 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2019

Asset Growth

94th percentile

64%

Faster asset growth than 94% of similar nonprofits.

2019 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2018 to 2019

Revenue Growth

94th percentile

95%

Faster revenue growth than 94% of similar nonprofits.

2019 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2018 to 2019

Balance Sheet
Liabilities / Assets46th percentile

Assets

Up

$6,492,466

Up $2,534,659 (+64%) from 2018

Net Assets

Up

$5,717,438

Up $2,290,084 (+67%) from 2018

Liabilities

Up

$775,028

Up $244,575 (+46%) from 2018

Revenue And Expenses
Liabilities / Revenue48th percentileNet Margin87th percentile

Revenue

Up

$5,268,516

Up $2,566,767 (+95%) from 2018

Expenses

Up

$3,240,360

Up $568,090 (+21%) from 2018

Net Income

Up

$2,028,156

Up $1,998,677 (+6780%) from 2018

Historical Trend

Balance Sheet Trend

Asset Growth94th 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

2019

Assets$6,492,466
Liabilities$775,028
Net Assets$5,717,438
Open 2019 Filing

Operations Trend

Revenue Growth94th 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

2019

Revenue$5,268,516
Expenses$3,240,360
Net Income$2,028,156
Open 2019 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2019 to Dec 31, 2019
Signed
Apr 2, 2020
Return Version
2019v5.1
Gross Receipts
$6,905,178
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$1,828,926$2,653,048▲ $824,122
Savings and Temporary Cash Investments$1,960,102$2,617,796▲ $657,694
Pledges and Grants Receivable$120,000$739,710▲ $619,710
Prepaid Expenses and Deferred Charges$32,086$45,761▲ $13,675
Land, Buildings, and Equipment, Net$12,216$7,108▼ $5,108
Total Assets$3,957,807$6,492,466▲ $2,534,659
Other Assets Total$4,477$429,043▲ $424,566
Liabilities
Grants Payable$329,048$418,145▲ $89,097
Accounts Payable and Accrued Expenses$64,923$269,978▲ $205,055
Other Liabilities$136,482$86,905▼ $49,577
Total Liabilities$530,453$775,028▲ $244,575
Net Assets / Fund Balance
Net Assets With Donor Restrictions$2,450,771$3,789,824▲ $1,339,053
Net Assets Without Donor Restrictions$976,583$1,927,614▲ $951,031
Total Net Assets Fund Balance$3,427,354$5,717,438▲ $2,290,084
Total Liabilities and Net Assets / Fund Balance$3,957,807$6,492,466▲ $2,534,659

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$6,821$5,333$12,154
Equipment$287$7,689$7,976
Leasehold Improvements$0$7,100$7,100
Other Assets Org$424,566--

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
Compensation and Service Providers
Top Officer Pay80th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Mark StoneCEO & PresidentFT$186,770$38,111$224,881
Jamshid ArjomandChief Science OfficerFT$158,031$20,867$178,898
June KinoshitaChief Strategic Programs OfficerFT$130,000$7,165$137,165
Lisa SchimmelCFOPT$111,425$24,062$135,487
Beth JohnstonChief Community Engagement OfficerFT$101,356$5,605$106,961

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
Jack GerblickBoard Member
Lee Frank Kolakowski PhdBoard Member
Linda Laurello-bambargerBoard 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
Louis M Kunkel PhdFormer Board Member
Christine FordSecretary
Ellen K HannanTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$4,942,896
Program Service Revenue
$202,448
Investment Income
$116,332
Other Revenue
$6,840
All Other Contributions
$4,539,565
Change in Net Assets
$2,028,156

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 Traded24$1,210,744Fair Market Value (FMV)
Total Noncash Contributions24$1,210,744-

Audited Revenue Reconciliation

Revenue per Audited Statements
$5,268,516
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$342,666
Total Revenue per Audited Statements
$5,611,182
Total Revenue per Form 990
$5,268,516
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$1,446,749
Grants and Similar Amounts Paid$974,862
Other Expenses$818,749
Total Fundraising Expense$423,187
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$914,862--$914,862
Other Salaries and Wages$541,705$41,711$146,554$729,970
Current Officers, Directors, Trustees, and Key Employees$336,315$157,975$44,976$539,266
Travel$139,621$14,278$17,927$171,826
Conferences and Meetings$103,501--$103,501
Fees for Services Other$75,323$6,876$17,614$99,813
Payroll Taxes$63,453$14,426$15,171$93,050
Information Technology$52,798$13,330$19,908$86,036
Other Employee Benefits$60,795$-161$23,829$84,463
Foreign Grants$60,000--$60,000
Office Expenses$30,045$8,167$9,242$47,454
Occupancy$26,463$7,357$7,841$41,661
Fees for Services Legal$17,849$13,314-$31,163
Other Expenses$19,355$3,047$622$19,977
All Other Expenses$470$19,216-$19,686
Fees for Services Accounting-$14,000-$14,000
Insurance$2,500$5,839-$8,339
Depreciation Depletion-$5,108-$5,108
Advertising$2,873-$887$3,760
Total Functional Expenses$2,492,690$324,483$423,187$3,240,360

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$3,321,098
Expenses per Audited Statements$3,240,360
Total Expenses per Form 990$3,240,360
Expenses Not Reported on Form 990$80,738
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)$180,000
Boston University School of Medicine Department of NeurologyBoston, MA501(c)(3)Mechanisms of Dux4-induced Muscle Atrophy$157,620
CHILDREN'S RESEARCH INSTITUTE CHILDRENS NATIONAL HEALTH SYSTEMSSilver Spring, MD501(c)(3)Optimizing Gapmer Therapy for Facioscapulohumeral Muscular Dystrophy$125,969
University of Nevada RenoReno, NV501(c)(3)New Compound Discovery Targeting Ash1l for Fshd$119,768
University of Colorado Denver Anschutz Medical CampusAurora, CO501(c)(3)Investigating the Molecular Consequences of Reduced Nmd in Fshd Skeletal Muscle Myoblasts$115,937
Yale UniversityNew Haven, CT501(c)(3)Identification and Testing of Dux4 Inhibitory Compounds$110,000
THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501(c)(3)Identification of Natural Human Dux4-targeted Mirnas and Development of a Novel Dux4-targeted Mirna-based Gene Therapy for Fshd$91,000
Ohio State University Medical Center Development & Alumni AffairsColumbus, OH501(c)(3)Fshd Research Fund$8,848
University of RochesterRochester, NY501(c)(3)Optimizing the Utility of the National Registry for Fshd Research and Trial Recruitment$5,720

International Summary

Offices
0
Employees
0
Spending
$170,232

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
EuropeProgram ServicesResearch Conference00$110,232
Latin AmericaGrantsN/a00$60,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$51,017
Fundraising Gross Income$49,403
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Peer to Peer Events$424,970$42,832$21,217$21,615
Superbowl Tickets Auction$10,700$3,900$3,900$0
Total Events$443,830$49,403$51,017$-1,614
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$67,905
Long-term Deferred Compensation Liability$19,000
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with 35% controlled entity
No
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 24, 2019, the organization approved amended bylaws and amended articles of incorporation. The articles of incorporation and bylaws were primarily amended to reflect the society's legal name change from facioscapulhumeral (fsh) society to the fshd society.”

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

“The board of directors reviews 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

“Fshd 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
Fshd Society
EIN
52-1762747
Phone
7813016060
Address
450 BEDFORD STREET, LEXINGTON, MA 02420

Signing Officer

Name
Mark a Stone
Title
CEO & President
Phone
7813016060
Signed
2020-04-02
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
15
Volunteers
864

Preparer

Firm
Smith Sullivan & Brown Pc
Address
80 FLANDERS ROAD - SUITE 200, WESTBOROUGH, MA 01581
Preparer
Sandra M Brown CPA
Phone
5088717178
Raw XML AppendixShowing 400 of 885 raw XML fields

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/Desc0RESEARCH THE SOCIETY SEEKS TO ACCELERATE RESEARCH TO EXPEDITE TREATMENTS AND A CURE FOR FSHD MUSCULAR DYSTROPHY. ORGANIZING AND FUNDING RESEARCH INTO THE CAUSES OF FSHD, AND, ULTIMATELY DEVELOPING TREATMENTS AND A CURE, IS THE SOCIETY'S CORE MISSION.
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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/OtherCompensationAmt1838111
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1924062
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt2020867
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt217165
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt225605
IRS990/Form990PartVIISectionAGrp/PersonNm0JAMES A CHIN SR
IRS990/Form990PartVIISectionAGrp/PersonNm1HOWARD L CHABNER JD
IRS990/Form990PartVIISectionAGrp/PersonNm2CHRISTINE FORD
IRS990/Form990PartVIISectionAGrp/PersonNm3ELLEN K HANNAN
IRS990/Form990PartVIISectionAGrp/PersonNm4AMY Z BEKIER
IRS990/Form990PartVIISectionAGrp/PersonNm5DAVID J GLASS MD
IRS990/Form990PartVIISectionAGrp/PersonNm6STUART LAI
IRS990/Form990PartVIISectionAGrp/PersonNm7LOUIS M KUNKEL PHD
IRS990/Form990PartVIISectionAGrp/PersonNm8WILLIAM R LEWIS III MD
IRS990/Form990PartVIISectionAGrp/PersonNm9MICHELLE HELEN MACKAY
IRS990/Form990PartVIISectionAGrp/PersonNm10LEE FRANK KOLAKOWSKI PHD
IRS990/Form990PartVIISectionAGrp/PersonNm11LINDA LAURELLO-BAMBARGER
IRS990/Form990PartVIISectionAGrp/PersonNm12GEORGE POLLOCK JR
IRS990/Form990PartVIISectionAGrp/PersonNm13THOMAS F RUEKERT
IRS990/Form990PartVIISectionAGrp/PersonNm14NEIL ANDREW SOLOMON MD FACP
IRS990/Form990PartVIISectionAGrp/PersonNm15CARDEN WYCKOFF
IRS990/Form990PartVIISectionAGrp/PersonNm16MARIE MORRELL
IRS990/Form990PartVIISectionAGrp/PersonNm17JACK GERBLICK
IRS990/Form990PartVIISectionAGrp/PersonNm18MARK STONE
IRS990/Form990PartVIISectionAGrp/PersonNm19LISA SCHIMMEL
IRS990/Form990PartVIISectionAGrp/PersonNm20JAMSHID ARJOMAND
IRS990/Form990PartVIISectionAGrp/PersonNm21JUNE KINOSHITA
IRS990/Form990PartVIISectionAGrp/PersonNm22BETH JOHNSTON
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/ReportableCompFromOrgAmt18186770
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt19111425
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20158031
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt21130000
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt22101356
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/TitleTxt4BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt5BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7FORMER BOARD 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/TitleTxt18CEO & PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt19CFO
IRS990/Form990PartVIISectionAGrp/TitleTxt20CHIEF SCIENCE OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt21CHIEF STRATEGIC PROGRAMS OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt22CHIEF COMMUNITY ENGAGEMENT OFFICER
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01991
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd01
IRS990/FundraisingAmt0394427
IRS990/FundraisingDirectExpensesAmt051017
IRS990/FundraisingGrossIncomeAmt049403
IRS990/GainOrLossGrp/SecuritiesAmt023201
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt017
IRS990/GrantAmt0974862
IRS990/GrantsPayableGrp/BOYAmt0329048
IRS990/GrantsPayableGrp/EOYAmt0418145
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt0914862
IRS990/GrantsToDomesticOrgsGrp/TotalAmt0914862
IRS990/GrantsToIndividualsInd00
IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt01608846
IRS990/GrossReceiptsAmt06905178
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd00
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt017
IRS990/IndivRcvdGreaterThan100KCnt05
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt019908
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt013330
IRS990/InformationTechnologyGrp/ProgramServicesAmt052798
IRS990/InformationTechnologyGrp/TotalAmt086036
IRS990/InsuranceGrp/ManagementAndGeneralAmt05839
IRS990/InsuranceGrp/ProgramServicesAmt02500
IRS990/InsuranceGrp/TotalAmt08339
IRS990/InvestmentIncomeGrp/ExclusionAmt093131
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt093131
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt01828926
IRS990/InvestmentsPubTradedSecGrp/EOYAmt02653048
IRS990/IRPDocumentCnt014
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt020122
IRS990/LandBldgEquipBasisNetGrp/BOYAmt012216
IRS990/LandBldgEquipBasisNetGrp/EOYAmt07108
IRS990/LandBldgEquipCostOrOtherBssAmt027230
IRS990/LegalDomicileStateCd0DC
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt01585645
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/NetAssetsOrFundBalancesBOYAmt03427354
IRS990/NetAssetsOrFundBalancesEOYAmt05717438
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt023201
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt023201
IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt0-1614
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt0-1614
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0261928
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt0976583
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt01927614
IRS990/NoncashContributionsAmt01209725
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt07841
IRS990/OccupancyGrp/ManagementAndGeneralAmt07357
IRS990/OccupancyGrp/ProgramServicesAmt026463
IRS990/OccupancyGrp/TotalAmt041661
IRS990/OfficeExpensesGrp/FundraisingAmt09242
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt08167
IRS990/OfficeExpensesGrp/ProgramServicesAmt030045
IRS990/OfficeExpensesGrp/TotalAmt047454
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt04477
IRS990/OtherAssetsTotalGrp/EOYAmt0429043
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt023829
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt0-161
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt060795
IRS990/OtherEmployeeBenefitsGrp/TotalAmt084463
IRS990/OtherExpensesGrp/Desc0PRINTING
IRS990/OtherExpensesGrp/Desc1BANK SERVICE CHARGES AN
IRS990/OtherExpensesGrp/Desc2FUNDRAISING EXPENSES
IRS990/OtherExpensesGrp/Desc3CHAPTER AND VOLUNTEER D
IRS990/OtherExpensesGrp/FundraisingAmt035210
IRS990/OtherExpensesGrp/FundraisingAmt149957
IRS990/OtherExpensesGrp/FundraisingAmt233449
IRS990/OtherExpensesGrp/FundraisingAmt3622
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt03047
IRS990/OtherExpensesGrp/ProgramServicesAmt038674
IRS990/OtherExpensesGrp/ProgramServicesAmt16088
IRS990/OtherExpensesGrp/ProgramServicesAmt219355
IRS990/OtherExpensesGrp/TotalAmt073884
IRS990/OtherExpensesGrp/TotalAmt159092
IRS990/OtherExpensesGrp/TotalAmt233449
IRS990/OtherExpensesGrp/TotalAmt319977
IRS990/OtherLiabilitiesGrp/BOYAmt0136482
IRS990/OtherLiabilitiesGrp/EOYAmt086905
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/BusinessCd1900099
IRS990/OtherRevenueMiscGrp/Desc0RETURN OF GRANT FUNDS
IRS990/OtherRevenueMiscGrp/Desc1OTHER INCOME
IRS990/OtherRevenueMiscGrp/ExclusionAmt0675
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt07779
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt07779
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt1675
IRS990/OtherRevenueTotalAmt08454
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt0146554
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt041711
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0541705
IRS990/OtherSalariesAndWagesGrp/TotalAmt0729970
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt015171
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt014426
IRS990/PayrollTaxesGrp/ProgramServicesAmt063453
IRS990/PayrollTaxesGrp/TotalAmt093050
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt0120000
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt0739710
IRS990/PoliciesReferenceChaptersInd01
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt032086
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt045761
IRS990/PrincipalOfficerNm0MARK A STONE
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/BusinessCd1900099
IRS990/ProgramServiceRevenueGrp/BusinessCd2900099
IRS990/ProgramServiceRevenueGrp/BusinessCd3900099
IRS990/ProgramServiceRevenueGrp/Desc0CORPORATE SPONSORSHIPS

Document Assets

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Filings

Displayed year

2019 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$6,492,466
Liabilities
$775,028
Net assets
$5,717,438
Revenue
$5,268,516
Expenses
$3,240,360
Net income
$2,028,156
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