Civic Intelligence

Facioscapulohumeral Society

990 • Fiscal year 2020 • EIN 52-1762747

Jan 01, 2020 to Dec 31, 2020 • Filed on Apr 01, 2021

Organization ProfileWWW.FSHDSOCIETY.ORG

View Organization Page

75 North Main Street No 1073Randolph, MA 02368

(781) 301-6060

Siviq Scores

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

Liabilities / Assets

32nd percentile

0.05x

Higher debt load relative to assets than 32% of similar nonprofits.

2020 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2020

Liabilities / Revenue

34th percentile

0.11x

Higher debt load relative to revenue than 34% of similar nonprofits.

2020 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2020

Net Margin

21st percentile

-9.0%

Higher net margin than 21% of similar nonprofits.

2020 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2020

Top Officer Pay

84th percentile

$253,895

Higher top officer pay than 84% of similar nonprofits.

Top officer pay equals 9.7% of source-year revenue.

2020 filings • 501(c)3 • $5M-$10M nonprofits • Source year 2020

Asset Growth

7th percentile

-10%

Faster asset growth than 7% of similar nonprofits.

2020 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2019 to 2020

Revenue Growth

7th percentile

-50%

Faster revenue growth than 7% of similar nonprofits.

2020 filings • 501(c)3 • $5M-$10M nonprofits • Annualized from 2019 to 2020

Balance Sheet
Liabilities / Assets32nd percentile

Assets

Down

$5,835,495

Down $656,971 (-10%) from 2019

Net Assets

Down

$5,533,672

Down $183,766 (-3.2%) from 2019

Liabilities

Down

$301,823

Down $473,205 (-61%) from 2019

Revenue And Expenses
Liabilities / Revenue34th percentileNet Margin21st percentile

Revenue

Down

$2,627,205

Down $2,641,311 (-50%) from 2019

Expenses

Down

$2,864,804

Down $375,556 (-12%) from 2019

Net Income

Down

-$237,599

Down $2,265,755 (-112%) from 2019

Historical Trend

Balance Sheet Trend

Asset Growth7th 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

2020

Assets$5,835,495
Liabilities$301,823
Net Assets$5,533,672
Open 2020 Filing

Operations Trend

Revenue Growth7th 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

2020

Revenue$2,627,205
Expenses$2,864,804
Net Income-$237,599
Open 2020 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2020 to Dec 31, 2020
Signed
Apr 1, 2021
Return Version
2020v4.1
Gross Receipts
$3,763,348
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 of & conduct research on facioscapulohumeral muscular dystrophy.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$2,617,796$3,280,720▲ $662,924
Investments in Publicly Traded Securities$2,653,048$1,943,769▼ $709,279
Pledges and Grants Receivable$739,710$340,181▼ $399,529
Investments Program Related-$150,000-
Prepaid Expenses and Deferred Charges$45,761$61,251▲ $15,490
Land, Buildings, and Equipment, Net$7,108$5,097▼ $2,011
Total Assets$6,492,466$5,835,495▼ $656,971
Other Assets Total$429,043$54,477▼ $374,566
Liabilities
Grants Payable$418,145$216,929▼ $201,216
Accounts Payable and Accrued Expenses$269,978$43,016▼ $226,962
Other Liabilities$86,905$41,878▼ $45,027
Total Liabilities$775,028$301,823▼ $473,205
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$1,927,614$3,007,424▲ $1,079,810
Net Assets With Donor Restrictions$3,789,824$2,526,248▼ $1,263,576
Total Net Assets Fund Balance$5,717,438$5,533,672▼ $183,766
Total Liabilities and Net Assets / Fund Balance$6,492,466$5,835,495▼ $656,971

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$5,097$7,057$12,154
Equipment$0$7,976$7,976
Leasehold Improvements$0$7,100$7,100

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2018$2,106,221-▼ $4,045$2,102,176-
2017$959,883$932,237▲ $260,501$46,400$2,106,221
2016$85,835$854,179▲ $55,869$36,000$959,883
Compensation and Service Providers
Top Officer Pay84th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Mark StoneCEO & PresidentFT$201,719$52,176$253,895
Jamshid ArjomandChief Science OfficerFT$187,883$28,620$216,503
Lisa SchimmelCFOPT$111,991$27,919$139,910
Beth JohnstonChief Community EngagementFT$117,550$6,491$124,041
June KinoshitaDirector of Research and Patient EngagementFT$101,000$5,620$106,620

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
David J Glass MdFormer Board Member
Thomas F RuekertFormer Board Member
Christine FordSecretary
Ellen K HannanTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$2,272,171
Program Service Revenue
$158,395
Investment Income
$196,112
Other Revenue
$527
All Other Contributions
$1,545,096
Change in Net Assets
$-237,599

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 Traded7$93,960Fair Market Value (FMV)
Total Noncash Contributions7$93,960-

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,627,205
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$279,842
Total Revenue per Audited Statements
$2,907,047
Total Revenue per Form 990
$2,627,205
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$1,622,282
Grants and Similar Amounts Paid$625,018
Other Expenses$617,504
Total Fundraising Expense$439,375
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$507,951$50,642$184,993$743,586
Current Officers, Directors, Trustees, and Key Employees$394,229$165,300$50,779$610,308
Grants to Domestic Orgs$551,134--$551,134
Other Employee Benefits$125,606$6,924$40,860$173,390
Information Technology$88,731$11,947$16,780$117,458
Payroll Taxes$63,446$14,498$17,054$94,998
Conferences and Meetings$90,452--$90,452
Foreign Grants$73,884--$73,884
Fees for Services Legal$38,977$8,783-$47,760
Travel$38,692$2,709$4,674$46,075
Occupancy$29,709$6,490$7,986$44,185
Office Expenses$25,074$5,059$6,879$37,012
Fees for Services Other$9,000$4,634$11,245$24,879
Other Expenses$22,207$4,399$25,322$22,207
Fees for Services Accounting-$15,500-$15,500
Insurance-$7,137-$7,137
All Other Expenses-$5,268-$5,268
Advertising$4,547-$609$5,156
Depreciation Depletion-$2,011-$2,011
Total Functional Expenses$2,114,128$311,301$439,375$2,864,804

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$3,090,813
Expenses per Audited Statements$2,864,804
Total Expenses per Form 990$2,864,804
Expenses Not Reported on Form 990$226,009
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) and Artifical Intelligence Proof of Concept for Fshd Research$348,000
THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501(c)(3)In Vivo Detection of Dux4 Mrna Using Rnascope$80,100
CHILDREN'S RESEARCH INSTITUTE CHILDRENS NATIONAL HEALTH SYSTEMSSilver Spring, MD501(c)(3)Membran Repair Deficit in Fshd Pathophysiology$74,829
University of MarylandBaltimore, MD501(c)(3)DEVELOPING A "SANDWICH" IMMUNOASSAY FOR SLC34A2, A POTENTIAL BIOMARKER FOR FSHD$19,700
University of RochesterRochester, NY501(c)(3)Digitizing the US Fshd Patient Registry$7,545
Ohio State University Medical Center Development & Alumni AffairsColumbus, OH501(c)(3)Fshd Research Fund$5,000

International Summary

Offices
0
Employees
0
Spending
$73,884

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)GrantsN/a00$73,884
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$18,698
Fundraising Gross Income$18,698
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Peer to Peer Events$541,907$18,698$8,345$10,353
Total Events$541,907$18,698$18,698$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$41,878
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 NO 1073, RANDOLPH, MA 02368

Signing Officer

Name
Mark a Stone
Title
CEO & President
Phone
7813016060
Signed
2021-04-01
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
14
Volunteers
99

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:

“Other losses -99,934. Bad debt expense -50,000.”

Part XI, Line 9

“Other losses: in april 2020, the society discovered that it was a victim of an email phishing scam. $111,934 was transferred to a fraudulent bank account. Following an investigation by the society's online bill payment service, the society was able to recover $12,000, which resulted in a net loss of $99,934, which is reported on part xii of schedule d in the form 990. Management took several actions because of this fraud, including the implementation of additional controls over electronic bill payments and wire transfers as well as cybersecurity training and monitoring for the society's staff. The society has also purchased social engineering insurance.”

Raw XML AppendixShowing 400 of 841 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/ActivityOrMissionDesc0INCREASE AWARENESS OF & CONDUCT RESEARCH ON FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY.
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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/OtherCompensationAmt20
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt30
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt40
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt50
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt60
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt70
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt80
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt90
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt100
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt110
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt120
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt130
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt140
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt150
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt160
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt170
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt180
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1947176
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt2027919
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt2127620
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt225620
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt236491
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/PersonNm7DAVID RUBIN
IRS990/Form990PartVIISectionAGrp/PersonNm8WILLIAM R LEWIS III MD
IRS990/Form990PartVIISectionAGrp/PersonNm9MICHELLE HELEN MACKAY
IRS990/Form990PartVIISectionAGrp/PersonNm10LEE FRANK KOLAKOWSKI PHD
IRS990/Form990PartVIISectionAGrp/PersonNm11LINDA LAURELLO
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/PersonNm18BRUCE RYSKAMP
IRS990/Form990PartVIISectionAGrp/PersonNm19MARK STONE
IRS990/Form990PartVIISectionAGrp/PersonNm20LISA SCHIMMEL
IRS990/Form990PartVIISectionAGrp/PersonNm21JAMSHID ARJOMAND
IRS990/Form990PartVIISectionAGrp/PersonNm22JUNE KINOSHITA
IRS990/Form990PartVIISectionAGrp/PersonNm23BETH 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/ReportableCompFromOrgAmt180
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt19206719
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20111991
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt21188883
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt22101000
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt23117550
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/TitleTxt5FORMER BOARD 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/TitleTxt17BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt18BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt19CEO & PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt20CFO
IRS990/Form990PartVIISectionAGrp/TitleTxt21CHIEF SCIENCE OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt22DIRECTOR OF RESEARCH AND PATIENT ENGAGEMENT
IRS990/Form990PartVIISectionAGrp/TitleTxt23CHIEF COMMUNITY ENGAGEMENT
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01991
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd01
IRS990/FundraisingAmt0523209
IRS990/FundraisingDirectExpensesAmt018698
IRS990/FundraisingGrossIncomeAmt018698
IRS990/GainOrLossGrp/SecuritiesAmt0123901
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt017
IRS990/GovernmentGrantsAmt0194500
IRS990/GrantAmt0625018
IRS990/GrantsPayableGrp/BOYAmt0418145
IRS990/GrantsPayableGrp/EOYAmt0216929
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt0551134
IRS990/GrantsToDomesticOrgsGrp/TotalAmt0551134
IRS990/GrantsToIndividualsInd00
IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt01241346
IRS990/GrossReceiptsAmt03763348
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd00
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt017
IRS990/IndivRcvdGreaterThan100KCnt05
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InfoInScheduleOPartXIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt016780
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt011947
IRS990/InformationTechnologyGrp/ProgramServicesAmt088731
IRS990/InformationTechnologyGrp/TotalAmt0117458
IRS990/InsuranceGrp/ManagementAndGeneralAmt07137
IRS990/InsuranceGrp/TotalAmt07137
IRS990/InvestmentIncomeGrp/ExclusionAmt072211
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt072211
IRS990/InvestmentInJointVentureInd01
IRS990/InvestmentsProgramRelatedGrp/EOYAmt0150000
IRS990/InvestmentsPubTradedSecGrp/BOYAmt02653048
IRS990/InvestmentsPubTradedSecGrp/EOYAmt01943769
IRS990/IRPDocumentCnt014
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt022133
IRS990/LandBldgEquipBasisNetGrp/BOYAmt07108
IRS990/LandBldgEquipBasisNetGrp/EOYAmt05097
IRS990/LandBldgEquipCostOrOtherBssAmt027230
IRS990/LegalDomicileStateCd0DC
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt01117445
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/NetAssetsOrFundBalancesBOYAmt05717438
IRS990/NetAssetsOrFundBalancesEOYAmt05533672
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt0123901
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt0123901
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt00
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0203767
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt01927614
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt03007424
IRS990/NoncashContributionsAmt093960
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt07986
IRS990/OccupancyGrp/ManagementAndGeneralAmt06490
IRS990/OccupancyGrp/ProgramServicesAmt029709
IRS990/OccupancyGrp/TotalAmt044185
IRS990/OfficeExpensesGrp/FundraisingAmt06879
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt05059
IRS990/OfficeExpensesGrp/ProgramServicesAmt025074
IRS990/OfficeExpensesGrp/TotalAmt037012
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt0429043
IRS990/OtherAssetsTotalGrp/EOYAmt054477
IRS990/OtherChangesInNetAssetsAmt0-149934
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt040860
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt06924
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt0125606
IRS990/OtherEmployeeBenefitsGrp/TotalAmt0173390
IRS990/OtherExpensesGrp/Desc0PRINTING
IRS990/OtherExpensesGrp/Desc1FUNDRAISING EXPENSES
IRS990/OtherExpensesGrp/Desc2BANK SERVICE CHARGES AN
IRS990/OtherExpensesGrp/Desc3CHAPTER AND VOLUNTEER D
IRS990/OtherExpensesGrp/FundraisingAmt029101
IRS990/OtherExpensesGrp/FundraisingAmt143093
IRS990/OtherExpensesGrp/FundraisingAmt225322
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt04399
IRS990/OtherExpensesGrp/ProgramServicesAmt038171
IRS990/OtherExpensesGrp/ProgramServicesAmt112318
IRS990/OtherExpensesGrp/ProgramServicesAmt222207
IRS990/OtherExpensesGrp/TotalAmt067272
IRS990/OtherExpensesGrp/TotalAmt143093
IRS990/OtherExpensesGrp/TotalAmt242039
IRS990/OtherExpensesGrp/TotalAmt322207
IRS990/OtherLiabilitiesGrp/BOYAmt086905
IRS990/OtherLiabilitiesGrp/EOYAmt041878
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/Desc0OTHER INCOME
IRS990/OtherRevenueMiscGrp/ExclusionAmt0527
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt0527
IRS990/OtherRevenueTotalAmt0527
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt0184993
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt050642
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0507951
IRS990/OtherSalariesAndWagesGrp/TotalAmt0743586
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt017054
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt014498
IRS990/PayrollTaxesGrp/ProgramServicesAmt063446
IRS990/PayrollTaxesGrp/TotalAmt094998
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt0739710
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt0340181
IRS990/PoliciesReferenceChaptersInd01
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt045761
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt061251
IRS990/PrincipalOfficerNm0MARK A STONE
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/BusinessCd1900099

Document Assets

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Filings

Displayed year

2020 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$5,835,495
Liabilities
$301,823
Net assets
$5,533,672
Revenue
$2,627,205
Expenses
$2,864,804
Net income
-$237,599
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