Civic Intelligence

Facioscapulohumeral Society

990 • Fiscal year 2021 • EIN 52-1762747

Jan 01, 2021 to Dec 31, 2021 • Filed on Apr 05, 2022

Organization ProfileWWW.FSHDSOCIETY.ORG

View Organization Page

75 North Main Street 1073Randolph, MA 02368

(781) 301-6060

Siviq Scores

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

Liabilities / Assets

56th percentile

0.17x

Higher debt load relative to assets than 56% of similar nonprofits.

2021 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2021

Liabilities / Revenue

59th percentile

0.23x

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

2021 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2021

Net Margin

56th percentile

16%

Higher net margin than 56% of similar nonprofits.

2021 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2021

Top Officer Pay

84th percentile

$245,542

Higher top officer pay than 84% of similar nonprofits.

Top officer pay equals 4.5% of source-year revenue.

2021 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2021

Asset Growth

81st percentile

31%

Faster asset growth than 81% of similar nonprofits.

2021 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2020 to 2021

Revenue Growth

89th percentile

109%

Faster revenue growth than 89% of similar nonprofits.

2021 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2020 to 2021

Balance Sheet
Liabilities / Assets56th percentile

Assets

Up

$7,638,819

Up $1,803,324 (+31%) from 2020

Net Assets

Up

$6,352,410

Up $818,738 (+15%) from 2020

Liabilities

Up

$1,286,409

Up $984,586 (+326%) from 2020

Revenue And Expenses
Liabilities / Revenue59th percentileNet Margin56th percentile

Revenue

Up

$5,488,220

Up $2,861,015 (+109%) from 2020

Expenses

Up

$4,615,323

Up $1,750,519 (+61%) from 2020

Net Income

Up

$872,897

Up $1,110,496 (+467%) from 2020

Historical Trend

Balance Sheet Trend

Asset Growth81st 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

2021

Assets$7,638,819
Liabilities$1,286,409
Net Assets$6,352,410
Open 2021 Filing

Operations Trend

Revenue Growth89th 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

2021

Revenue$5,488,220
Expenses$4,615,323
Net Income$872,897
Open 2021 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2021 to Dec 31, 2021
Signed
Apr 5, 2022
Return Version
2021v4.2
Gross Receipts
$6,470,177
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$3,280,720$4,820,728▲ $1,540,008
Investments in Publicly Traded Securities$1,943,769$2,246,249▲ $302,480
Pledges and Grants Receivable$340,181$293,686▼ $46,495
Investments Program Related$150,000$150,000→ $0
Prepaid Expenses and Deferred Charges$61,251$123,679▲ $62,428
Land, Buildings, and Equipment, Net$5,097$0▼ $5,097
Total Assets$5,835,495$7,638,819▲ $1,803,324
Other Assets Total$54,477$4,477▼ $50,000
Liabilities
Grants Payable$216,929$1,166,878▲ $949,949
Other Liabilities$41,878$67,801▲ $25,923
Accounts Payable and Accrued Expenses$43,016$51,730▲ $8,714
Total Liabilities$301,823$1,286,409▲ $984,586
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$3,007,424$3,975,882▲ $968,458
Net Assets With Donor Restrictions$2,526,248$2,376,528▼ $149,720
Total Net Assets Fund Balance$5,533,672$6,352,410▲ $818,738
Total Liabilities and Net Assets / Fund Balance$5,835,495$7,638,819▲ $1,803,324

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
Compensation and Service Providers
Top Officer Pay84th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Mark StoneCEO & PresidentFT$199,683$45,859$245,542
Jamshid ArjomandChief Science OfficerFT$189,401$20,018$209,419
Lisa SchimmelCFOFT$106,139$22,503$128,642
Beth JohnstonChief Community Engagement OfficerFT$116,000$5,364$121,364
June KinoshitaDirector of Research & Patient EngagementFT$101,000$4,702$105,702

Board Members and Trustees

NameTitle
James a Chin SrChairman
Howard L Chabner JdVice Chairman
Amy Z BekierBoard Member
Bruce RyskampBoard Member
Carden WyckoffBoard Member
David RubinBoard Member
George Pollock JrBoard Member
Jack GerblickBoard Member
Lee Frank Kolakowski PhdBoard Member
Linda LaurelloBoard Member
Marie MorrellBoard Member
Michelle Helen MackayBoard Member
Neil Andrew Solomon Md FacpBoard Member
Stuart LaiBoard Member
William R Lewis Iii MdBoard Member
Christine FordSecretary
Ellen K HannanTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$4,546,323
Program Service Revenue
$172,014
Investment Income
$421,183
Other Revenue
$348,700
All Other Contributions
$3,432,941
Change in Net Assets
$872,897

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 Traded9$1,071,212Fair Market Value (FMV)
Total Noncash Contributions9$1,071,212-

Audited Revenue Reconciliation

Revenue per Audited Statements
$5,488,220
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$173,545
Total Revenue per Audited Statements
$5,661,765
Total Revenue per Form 990
$5,488,220
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$2,315,936
Salaries, Compensation, and Employee Benefits$1,637,073
Other Expenses$662,314
Total Fundraising Expense$436,330
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$1,426,356--$1,426,356
Foreign Grants$889,580--$889,580
Other Salaries and Wages$547,301$67,892$179,658$794,851
Current Officers, Directors, Trustees, and Key Employees$381,298$153,196$49,109$583,603
Other Employee Benefits$111,016$8,133$32,322$151,471
Information Technology$96,192$14,571$18,405$129,168
Payroll Taxes$72,455$16,362$18,331$107,148
Conferences and Meetings$70,593--$70,593
Travel$50,638$871$2,322$53,831
Fees for Services Other$52,282$876-$53,158
Occupancy$30,982$7,971$7,861$46,814
Office Expenses$29,537$6,197$7,735$43,469
Other Expenses$31,528$0$47,854$31,528
Fees for Services Accounting-$15,500-$15,500
All Other Expenses$4,887$5,250$70$10,207
Insurance$105$8,209-$8,314
Fees for Services Legal$300$6,840-$7,140
Depreciation Depletion-$5,097-$5,097
Advertising$1,968-$10$1,978
Total Functional Expenses$3,853,263$325,730$436,330$4,615,323

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$4,843,027
Expenses per Audited Statements$4,615,323
Total Expenses per Form 990$4,615,323
Expenses Not Reported on Form 990$227,704
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Yale UniversityNew Haven, CT501(c)(3)Characterization of Dux4-induced Metabolic and Hypoxic Changes in Fshd and Identification of Toxic Dux4-induced Transcripts.$360,280
University of Kansas Medical CenterFairway, KS501(c)(3)Clinical Trials Research Network (ctrn) for Facioscapulohumeral Muscular Dystrophy (fshd)$300,000
THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501(c)(3)Developing Aav-crispr-cas13 Based Gene Therapy for Fshd$193,310
University of ColoradoDenver, CO501(c)(3)Mechanism of Context-specific Nmd Inhibition by Dux4$152,600
University of MarylandBaltimore, MD501(c)(3)Slc34a2 as a Biomarker for Fshd$152,600
St Louis UniversitySt Louis, MO501(c)(3)Molecular Mechanisms of P38-dependent and Independent Dux4 Activation During Myogenesis$121,900
CHILDREN'S RESEARCH INSTITUTE CHILDRENS NATIONAL HEALTH SYSTEMSSilver Spring, MD501(c)(3)Membrane Repair Deficit in Fshd Pathophysiology$63,735
University of UtahSalt Lake City, UT501(c)(3)Nanopore Cas9-targeted Sequencing (ncats Diagnostics for Fshd)$49,621
University of RochesterRochester, NY501(c)(3)Fshd Biological Resources Available Through the Ctrn (bioavailable)$24,310

International Summary

Offices
0
Employees
0
Spending
$889,580

International Compliance

Foreign grant records maintained
No
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
East Asia and the PacificGrantsN/a00$473,782
Europe (including Iceland & Greenland) - Albania, Andorra, Austria, BelgiumGrantsN/a00$415,798
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$80,497
Fundraising Gross Income$80,497
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Peer to Peer Events$784,149$45,887$29,201$16,686
Other Special Events$114,647$34,610$14,425$20,185
Total Events$898,796$80,497$80,497$0
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 Deferred Compensation Liability$67,801
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
No
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 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 meeting. 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
75 NORTH MAIN STREET 1073, RANDOLPH, MA 02368

Signing Officer

Name
Mark a Stone
Title
CEO & President
Phone
7813016060
Signed
2022-04-05
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
696

Preparer

Firm
Smith Sullivan & Brown Pc
Address
80 FLANDERS ROAD - SUITE 200, WESTBOROUGH, MA 01581
Preparer
Sandra M Brown CPA
Phone
5088717178
Supplemental Narrative

Additional Explanations

FORM 990, PART XI, LINE 9:

“BAD DEBT EXPENSE -2,504.”

Financial Statement Notes

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“BAD DEBT EXPENSE 2,504.”

Raw XML AppendixShowing 400 of 942 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/OtherCompensationAmt100
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt110
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt120
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt130
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt140
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt150
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt160
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1745859
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1822503
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1919018
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt204702
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt215364
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/PersonNm5STUART LAI
IRS990/Form990PartVIISectionAGrp/PersonNm6DAVID RUBIN
IRS990/Form990PartVIISectionAGrp/PersonNm7WILLIAM R LEWIS III MD
IRS990/Form990PartVIISectionAGrp/PersonNm8MICHELLE HELEN MACKAY
IRS990/Form990PartVIISectionAGrp/PersonNm9LEE FRANK KOLAKOWSKI PHD
IRS990/Form990PartVIISectionAGrp/PersonNm10LINDA LAURELLO
IRS990/Form990PartVIISectionAGrp/PersonNm11GEORGE POLLOCK JR
IRS990/Form990PartVIISectionAGrp/PersonNm12NEIL ANDREW SOLOMON MD FACP
IRS990/Form990PartVIISectionAGrp/PersonNm13CARDEN WYCKOFF
IRS990/Form990PartVIISectionAGrp/PersonNm14MARIE MORRELL
IRS990/Form990PartVIISectionAGrp/PersonNm15JACK GERBLICK
IRS990/Form990PartVIISectionAGrp/PersonNm16BRUCE RYSKAMP
IRS990/Form990PartVIISectionAGrp/PersonNm17MARK STONE
IRS990/Form990PartVIISectionAGrp/PersonNm18LISA SCHIMMEL
IRS990/Form990PartVIISectionAGrp/PersonNm19JAMSHID ARJOMAND
IRS990/Form990PartVIISectionAGrp/PersonNm20JUNE KINOSHITA
IRS990/Form990PartVIISectionAGrp/PersonNm21BETH 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/ReportableCompFromOrgAmt17199683
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt18106139
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt19190401
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20101000
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt21116000
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/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/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/TitleTxt17CEO & PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt18CFO
IRS990/Form990PartVIISectionAGrp/TitleTxt19CHIEF SCIENCE OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt20DIR OF RESEARCH & PATIENT ENGAGEMENT
IRS990/Form990PartVIISectionAGrp/TitleTxt21CHIEF COMMUNITY ENGAGEMENT OFFICER
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01991
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd01
IRS990/FundraisingAmt0818299
IRS990/FundraisingDirectExpensesAmt080497
IRS990/FundraisingGrossIncomeAmt080497
IRS990/GainOrLossGrp/SecuritiesAmt0299156
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt017
IRS990/GovernmentGrantsAmt0285077
IRS990/GrantAmt02315936
IRS990/GrantsPayableGrp/BOYAmt0216929
IRS990/GrantsPayableGrp/EOYAmt01166878
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt01426356
IRS990/GrantsToDomesticOrgsGrp/TotalAmt01426356
IRS990/GrantsToIndividualsInd00
IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt01200616
IRS990/GrossReceiptsAmt06470177
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd00
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt017
IRS990/IndivRcvdGreaterThan100KCnt05
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InfoInScheduleOPartXIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt018405
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt014571
IRS990/InformationTechnologyGrp/ProgramServicesAmt096192
IRS990/InformationTechnologyGrp/TotalAmt0129168
IRS990/InsuranceGrp/ManagementAndGeneralAmt08209
IRS990/InsuranceGrp/ProgramServicesAmt0105
IRS990/InsuranceGrp/TotalAmt08314
IRS990/InvestmentIncomeGrp/ExclusionAmt0122027
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt0122027
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsProgramRelatedGrp/BOYAmt0150000
IRS990/InvestmentsProgramRelatedGrp/EOYAmt0150000
IRS990/InvestmentsPubTradedSecGrp/BOYAmt01943769
IRS990/InvestmentsPubTradedSecGrp/EOYAmt02246249
IRS990/IRPDocumentCnt012
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt00
IRS990/LandBldgEquipBasisNetGrp/BOYAmt05097
IRS990/LandBldgEquipBasisNetGrp/EOYAmt00
IRS990/LandBldgEquipCostOrOtherBssAmt00
IRS990/LegalDomicileStateCd0DC
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt0901460
IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd00
IRS990/LocalChaptersInd01
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd00
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0INCREASE AWARENESS, UNDERSTANDING OF AND CONDUCT RESEARCH ON FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd01
IRS990/NetAssetsOrFundBalancesBOYAmt05533672
IRS990/NetAssetsOrFundBalancesEOYAmt06352410
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt0299156
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt0299156
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt00
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0-51655
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt03007424
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt03975882
IRS990/NoncashContributionsAmt01071212
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt07861
IRS990/OccupancyGrp/ManagementAndGeneralAmt07971
IRS990/OccupancyGrp/ProgramServicesAmt030982
IRS990/OccupancyGrp/TotalAmt046814
IRS990/OfficeExpensesGrp/FundraisingAmt07735
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt06197
IRS990/OfficeExpensesGrp/ProgramServicesAmt029537
IRS990/OfficeExpensesGrp/TotalAmt043469
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt054477
IRS990/OtherAssetsTotalGrp/EOYAmt04477
IRS990/OtherChangesInNetAssetsAmt0-2504
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt032322
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt08133
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt0111016
IRS990/OtherEmployeeBenefitsGrp/TotalAmt0151471
IRS990/OtherExpensesGrp/Desc0BANK SERVICE CHARGES AN
IRS990/OtherExpensesGrp/Desc1PRINTING
IRS990/OtherExpensesGrp/Desc2FUNDRAISING EXPENSES
IRS990/OtherExpensesGrp/Desc3RESEARCH PROJECTS
IRS990/OtherExpensesGrp/FundraisingAmt043357
IRS990/OtherExpensesGrp/FundraisingAmt129296
IRS990/OtherExpensesGrp/FundraisingAmt247854
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt08765
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt10
IRS990/OtherExpensesGrp/ProgramServicesAmt022643
IRS990/OtherExpensesGrp/ProgramServicesAmt133602
IRS990/OtherExpensesGrp/ProgramServicesAmt231528
IRS990/OtherExpensesGrp/TotalAmt074765
IRS990/OtherExpensesGrp/TotalAmt162898
IRS990/OtherExpensesGrp/TotalAmt247854
IRS990/OtherExpensesGrp/TotalAmt331528
IRS990/OtherLiabilitiesGrp/BOYAmt041878
IRS990/OtherLiabilitiesGrp/EOYAmt067801
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/BusinessCd1900099
IRS990/OtherRevenueMiscGrp/BusinessCd2900099
IRS990/OtherRevenueMiscGrp/Desc0STIMULUS/COVID CREDITS
IRS990/OtherRevenueMiscGrp/Desc1RETURN OF GRANT FUNDS
IRS990/OtherRevenueMiscGrp/Desc2OTHER INCOME
IRS990/OtherRevenueMiscGrp/ExclusionAmt0424
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt0313636
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt134640
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt0313636
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt134640
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt2424
IRS990/OtherRevenueTotalAmt0348700
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt0179658
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt067892
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0547301
IRS990/OtherSalariesAndWagesGrp/TotalAmt0794851
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt018331
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt016362
IRS990/PayrollTaxesGrp/ProgramServicesAmt072455
IRS990/PayrollTaxesGrp/TotalAmt0107148
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt0340181
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt0293686
IRS990/PoliciesReferenceChaptersInd01
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt061251
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt0123679
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

2021 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$7,638,819
Liabilities
$1,286,409
Net assets
$6,352,410
Revenue
$5,488,220
Expenses
$4,615,323
Net income
$872,897
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