Civic Intelligence

Facioscapulohumeral Society

990 • Fiscal year 2022 • EIN 52-1762747

Jan 01, 2022 to Dec 31, 2022 • Filed on Mar 30, 2023

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

63rd percentile

0.23x

Higher debt load relative to assets than 63% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2022

Liabilities / Revenue

70th percentile

0.40x

Higher debt load relative to revenue than 70% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2022

Net Margin

9th percentile

-34%

Higher net margin than 9% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2022

Top Officer Pay

86th percentile

$272,924

Higher top officer pay than 86% of similar nonprofits.

Top officer pay equals 7.8% of source-year revenue.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2022

Asset Growth

6th percentile

-20%

Faster asset growth than 6% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2021 to 2022

Revenue Growth

11th percentile

-36%

Faster revenue growth than 11% of similar nonprofits.

2022 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2021 to 2022

Balance Sheet
Liabilities / Assets63rd percentile

Assets

Down

$6,079,315

Down $1,559,504 (-20%) from 2021

Net Assets

Down

$4,678,617

Down $1,673,793 (-26%) from 2021

Liabilities

Up

$1,400,698

Up $114,289 (+8.9%) from 2021

Revenue And Expenses
Liabilities / Revenue70th percentileNet Margin9th percentile

Revenue

Down

$3,508,920

Down $1,979,300 (-36%) from 2021

Expenses

Up

$4,712,959

Up $97,636 (+2.1%) from 2021

Net Income

Down

-$1,204,039

Down $2,076,936 (-238%) from 2021

Historical Trend

Balance Sheet Trend

Asset Growth6th 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

2022

Assets$6,079,315
Liabilities$1,400,698
Net Assets$4,678,617
Open 2022 Filing

Operations Trend

Revenue Growth11th 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

2022

Revenue$3,508,920
Expenses$4,712,959
Net Income-$1,204,039
Open 2022 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2022 to Dec 31, 2022
Signed
Mar 30, 2023
Return Version
2022v5.0
Gross Receipts
$3,774,376
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$4,820,728$3,650,917▼ $1,169,811
Investments in Publicly Traded Securities$2,246,249$1,806,777▼ $439,472
Pledges and Grants Receivable$293,686$162,636▼ $131,050
Investments Program Related$150,000$150,000→ $0
Prepaid Expenses and Deferred Charges$123,679$58,985▼ $64,694
Total Assets$7,638,819$6,079,315▼ $1,559,504
Other Assets Total$4,477$250,000▲ $245,523
Liabilities
Grants Payable$1,166,878$1,256,408▲ $89,530
Accounts Payable and Accrued Expenses$51,730$72,281▲ $20,551
Other Liabilities$67,801$72,009▲ $4,208
Total Liabilities$1,286,409$1,400,698▲ $114,289
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$3,975,882$2,724,386▼ $1,251,496
Net Assets With Donor Restrictions$2,376,528$1,954,231▼ $422,297
Total Net Assets Fund Balance$6,352,410$4,678,617▼ $1,673,793
Total Liabilities and Net Assets / Fund Balance$7,638,819$6,079,315▼ $1,559,504

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2018$2,106,221-▼ $4,045$2,102,176-
Compensation and Service Providers
Top Officer Pay86th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Mark StoneCEO & PresidentFT$223,921$49,003$272,924
Jamshid ArjomandChief Science OfficerFT$197,520$19,717$217,237
Leigh ReynoldsDirector of Research & PatientFT$114,232$30,953$145,185
Lisa SchimmelCFOFT$116,490$23,958$140,448
Kenneth Alexander KahtavaChief Business OfficerFT$108,907$20,523$129,430
Beth JohnstonChief Community EngagementFT$122,500$5,655$128,155
June KinoshitaSenior Director of Research and EducationFT$103,000$4,794$107,794

Board Members and Trustees

NameTitle
James a Chin SrChairman
Howard L Chabner JdVice Chairman
Amy Z BekierBoard Member
Bruce RyskampBoard 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
Carden WyckoffFormer Board Member
Christine FordSecretary
Ellen K HannanTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Iqvia INCData Management And Registry100 IMS DRIVE, Parsippany, NJ 07054, Sz$320,000
Biognosys AgContract Research Organization-$123,211
Revenue and Support

Revenue Composition

Contributions and Grants
$2,930,776
Program Service Revenue
$304,466
Investment Income
$133,904
Other Revenue
$139,774
All Other Contributions
$2,178,534
Change in Net Assets
$-1,204,039

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 Traded4$32,687Fair Market Value (FMV)
Total Noncash Contributions4$32,687-

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,508,920
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$-86,578
Total Revenue per Audited Statements
$3,422,342
Total Revenue per Form 990
$3,508,920
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$2,016,652
Other Expenses$1,633,557
Grants and Similar Amounts Paid$1,062,750
Total Fundraising Expense$429,078
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$838,590$68,961$153,818$1,061,369
Foreign Grants$648,850--$648,850
Current Officers, Directors, Trustees, and Key Employees$408,284$167,740$54,585$630,609
Grants to Domestic Orgs$413,900--$413,900
Conferences and Meetings$303,776--$303,776
Travel$193,236$10,350$6,707$210,293
Fees for Services Other$207,732$1,063$750$209,545
Other Employee Benefits$158,616$8,263$28,108$194,987
Information Technology$162,798$17,962$12,915$193,675
Payroll Taxes$95,697$17,443$16,547$129,687
Other Expenses$46,422$9,439$57,303$57,303
All Other Expenses$24,937$16,479$641$42,057
Office Expenses$26,804$4,010$4,041$34,855
Fees for Services Accounting-$16,000-$16,000
Advertising$15,302--$15,302
Occupancy$7,582$1,733$1,516$10,831
Insurance-$8,912-$8,912
Fees for Services Legal-$6,880-$6,880
Total Functional Expenses$3,928,646$355,235$429,078$4,712,959

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$5,096,135
Expenses per Audited Statements$4,712,959
Total Expenses per Form 990$4,712,959
Expenses Not Reported on Form 990$383,176
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Johns Hopkins UniversityBaltimore, MD501(c)(3)The Fibro-adipogenic Progenitors, the Exosomes, and the Fshd Myopathy$143,000
University of Kansas Medical CenterFairway, KS501(c)(3)Clinical Trials Research Network (ctrn) for Facioscapulohumeral Muscular Dystrophy (fshd)$120,000
University of MinnesotaMinneapolis, MN501(c)(3)Interrogation of Mdux Expression in Muscle in Mice$83,500
St Louis UniversitySt Louis, MO501(c)(3)Molecular Mechanisms of P38-dependent and -independent Dux4 Activation During Myogenesis$67,100

International Summary

Offices
0
Employees
0
Spending
$648,850

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/a--$443,150
Middle East and North AfricaGrantsN/a--$118,700
South AmericaGrantsN/a--$87,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$98,581
Fundraising Gross Income$98,581
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Peer to Peer Events$768,895$70,822$38,298$32,524
Other Special Events$69,100$27,759$13,782$13,977
Total Events$837,995$98,581$98,581$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$72,009
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
2023-03-30
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Mark a Stone
Formed
1991
Legal Domicile
Dc
Voting Board Members
16
Independent Board Members
16
Employees
17
Volunteers
863

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 -385.”

Financial Statement Notes

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“BAD DEBT EXPENSE 385.”

Raw XML AppendixShowing 400 of 872 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/Form990PartVIISectionAGrp/OfficerInd3X
IRS990/Form990PartVIISectionAGrp/OfficerInd4X
IRS990/Form990PartVIISectionAGrp/OfficerInd5X
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/OtherCompensationAmt1749003
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1823958
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1919717
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt2030953
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt215655
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt2220523
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt234794
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/PersonNm20LEIGH REYNOLDS
IRS990/Form990PartVIISectionAGrp/PersonNm21BETH JOHNSTON
IRS990/Form990PartVIISectionAGrp/PersonNm22KENNETH ALEXANDER KAHTAVA
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/ReportableCompFromOrgAmt17223921
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt18116490
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt19197520
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20114232
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt21122500
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt22108907
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt23103000
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/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/TitleTxt13FORMER BOARD 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
IRS990/Form990PartVIISectionAGrp/TitleTxt21CHIEF COMMUNITY ENGAGEMENT
IRS990/Form990PartVIISectionAGrp/TitleTxt22CHIEF BUSINESS OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt23SENIOR DIRECTOR OF RESEARCH AND EDUCATION
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01991
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd01
IRS990/FundraisingAmt0739414
IRS990/FundraisingDirectExpensesAmt098581
IRS990/FundraisingGrossIncomeAmt098581
IRS990/GainOrLossGrp/SecuritiesAmt035699
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt016
IRS990/GrantAmt01062750
IRS990/GrantsPayableGrp/BOYAmt01166878
IRS990/GrantsPayableGrp/EOYAmt01256408
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt0413900
IRS990/GrantsToDomesticOrgsGrp/TotalAmt0413900
IRS990/GrantsToIndividualsInd00
IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt0202574
IRS990/GrossReceiptsAmt03774376
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd00
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt016
IRS990/IndivRcvdGreaterThan100KCnt07
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InfoInScheduleOPartXIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt012915
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt017962
IRS990/InformationTechnologyGrp/ProgramServicesAmt0162798
IRS990/InformationTechnologyGrp/TotalAmt0193675
IRS990/InsuranceGrp/ManagementAndGeneralAmt08912
IRS990/InsuranceGrp/TotalAmt08912
IRS990/InvestmentIncomeGrp/ExclusionAmt098205
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt098205
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsProgramRelatedGrp/BOYAmt0150000
IRS990/InvestmentsProgramRelatedGrp/EOYAmt0150000
IRS990/InvestmentsPubTradedSecGrp/BOYAmt02246249
IRS990/InvestmentsPubTradedSecGrp/EOYAmt01806777
IRS990/IRPDocumentCnt013
IRS990/IRPDocumentW2GCnt00
IRS990/LegalDomicileStateCd0DC
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt0166875
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/NetAssetsOrFundBalancesBOYAmt06352410
IRS990/NetAssetsOrFundBalancesEOYAmt04678617
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt035699
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt035699
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt00
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0-469369
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt03975882
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt02724386
IRS990/NoncashContributionsAmt032687
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt01516
IRS990/OccupancyGrp/ManagementAndGeneralAmt01733
IRS990/OccupancyGrp/ProgramServicesAmt07582
IRS990/OccupancyGrp/TotalAmt010831
IRS990/OfficeExpensesGrp/FundraisingAmt04041
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt04010
IRS990/OfficeExpensesGrp/ProgramServicesAmt026804
IRS990/OfficeExpensesGrp/TotalAmt034855
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt04477
IRS990/OtherAssetsTotalGrp/EOYAmt0250000
IRS990/OtherChangesInNetAssetsAmt0-385
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt028108
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt08263
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt0158616
IRS990/OtherEmployeeBenefitsGrp/TotalAmt0194987
IRS990/OtherExpensesGrp/Desc0RESEARCH PROJECTS
IRS990/OtherExpensesGrp/Desc1BANK SERVICE CHARGES AN
IRS990/OtherExpensesGrp/Desc2PRINTING
IRS990/OtherExpensesGrp/Desc3FUNDRAISING EXPENSES
IRS990/OtherExpensesGrp/FundraisingAmt050474
IRS990/OtherExpensesGrp/FundraisingAmt141673
IRS990/OtherExpensesGrp/FundraisingAmt257303
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt09439
IRS990/OtherExpensesGrp/ProgramServicesAmt0345292
IRS990/OtherExpensesGrp/ProgramServicesAmt130828
IRS990/OtherExpensesGrp/ProgramServicesAmt246422
IRS990/OtherExpensesGrp/TotalAmt0345292
IRS990/OtherExpensesGrp/TotalAmt190741
IRS990/OtherExpensesGrp/TotalAmt288095
IRS990/OtherExpensesGrp/TotalAmt357303
IRS990/OtherLiabilitiesGrp/BOYAmt067801
IRS990/OtherLiabilitiesGrp/EOYAmt072009
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/BusinessCd1900099
IRS990/OtherRevenueMiscGrp/Desc0RETURN OF GRANT FUNDS
IRS990/OtherRevenueMiscGrp/Desc1OTHER INCOME
IRS990/OtherRevenueMiscGrp/ExclusionAmt0500
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt0139274
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt0139274
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt1500
IRS990/OtherRevenueTotalAmt0139774
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt0153818
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt068961
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0838590
IRS990/OtherSalariesAndWagesGrp/TotalAmt01061369
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt016547
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt017443
IRS990/PayrollTaxesGrp/ProgramServicesAmt095697
IRS990/PayrollTaxesGrp/TotalAmt0129687
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt0293686

Document Assets

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Filings

Displayed year

2022 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$6,079,315
Liabilities
$1,400,698
Net assets
$4,678,617
Revenue
$3,508,920
Expenses
$4,712,959
Net income
-$1,204,039
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