Civic Intelligence

Fshd Society

EIN 52-1762747 • 501(c)3 • Randolph, MA

View Organization Page

Profile

Find treatments and a cure for facioscapulohumeral muscular dystrophy (fshd) while empowering our families.

75 North Main Street 1073Randolph, MA 02368

www.fshdsociety.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

61st percentile

0.22x

Higher debt load relative to assets than 61% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2023

Liabilities / Revenue

66th percentile

0.32x

Higher debt load relative to revenue than 66% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2023

Net Margin

47th percentile

3.2%

Higher net margin than 47% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2023

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

53rd percentile

5.6%

Faster asset growth than 53% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2022 to 2023

Revenue Growth

76th percentile

27%

Faster revenue growth than 76% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2022 to 2023

Balance Sheet
Liabilities / Assets61st percentile

Assets

Down

$5,592,191

Down $829,063 (-13%) from 2023

Liabilities

Down

$893,399

Down $513,172 (-36%) from 2023

Net Assets

Down

$4,698,792

Down $315,891 (-6.3%) from 2023

Operations
Liabilities / Revenue66th percentileNet Margin47th percentile

Revenue

Up

$4,942,571

Up $487,157 (+11%) from 2023

Expenses

Up

$5,475,276

Up $1,164,210 (+27%) from 2023

Net Income

Down

-$532,705

Down $677,053 (-469%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth53rd percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$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

2024

Assets$5,592,191
Liabilities$893,399
Net Assets$4,698,792
Open 2024 Filing

Operations Trend

Revenue Growth76th percentile

Revenue, expenses, and net income by year, with the latest 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

2024

Revenue$4,942,571
Expenses$5,475,276
Net Income-$532,705
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$5,592,191
Liabilities
$893,399
Net assets
$4,698,792
Revenue
$4,942,571
Expenses
$5,475,276
Net income
-$532,705
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
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
May 13, 2025
Return Version
2024v5.1
Gross Receipts
$5,005,621
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.

Find treatments and a cure for fshd while empowering our families

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$2,000,664$2,316,091▲ $315,427
Intangible Assets-$1,433,832-
Savings and Temporary Cash Investments$3,571,287$1,080,178▼ $2,491,109
Prepaid Expenses and Deferred Charges$62,502$337,028▲ $274,526
Accounts Receivable-$175,000-
Investments Program Related$150,000$150,000→ $0
Pledges and Grants Receivable$84,086$84,086→ $0
Cash and Non-Interest-Bearing Accounts$2,715$15,976▲ $13,261
Total Assets$6,421,254$5,592,191▼ $829,063
Other Assets Total$550,000$0▼ $550,000
Liabilities
Grants Payable$982,792$407,660▼ $575,132
Accounts Payable and Accrued Expenses$320,525$343,126▲ $22,601
Other Liabilities$103,254$142,613▲ $39,359
Total Liabilities$1,406,571$893,399▼ $513,172
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$3,828,056$4,583,881▲ $755,825
Net Assets With Donor Restrictions$1,186,627$114,911▼ $1,071,716
Total Net Assets Fund Balance$5,014,683$4,698,792▼ $315,891
Total Liabilities and Net Assets / Fund Balance$6,421,254$5,592,191▼ $829,063
Compensation and Service Providers
Top Officer PayScore unavailable

Employees

NameTitleFull / Part TimeBaseOtherTotal
Mark StoneCEO & PresidentFT$226,757$16,908$243,665
Kenneth Alexander KahtavaChief Operating OfficerFT$171,156$47,774$218,930
Agnes M MestrichChief Financial OfficerFT$168,829$24,325$193,154
Carolyn LloydChief Development OfficerFT$145,482$15,991$161,473
Beth JohnstonChief Community Engagement OfficerFT$151,086$6,835$157,921
Amanda HillSenior Director of Research and CareFT$120,469$24,177$144,646
June KinoshitaDirector of Research and Patient EngagementFT$110,048$5,022$115,070

Board Members and Trustees

NameTitle
James a Chin SrChairman
Howard L Chabner JdVice Chairman
Amy Z BekierBoard Member
Bruce RyskampBoard Member
Chris MancillBoard Member
Jack GerblickBoard Member
Jason ShiBoard Member
Lee Frank Kolakowski PhdBoard Member
Linda LaurelloBoard Member
Mel HayesBoard Member
Michelle Helen MackayBoard Member
Neil Andrew Solomon Md FacpBoard Member
Robert Humphreys JrBoard Member
Stuart LaiBoard Member
William R Lewis Iii MdBoard Member
William SarrailleBoard Member
Christine FordFormer Secretary
Ellen K HannanFormer Treasurer
George Pollock JrTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
LumiioData Management And Registry515 W NORTH SHORE DRIVE 2ND FLOOR, Hartland, WI 53029, Ca$672,433
JigsawMarketing Materials And Website BuildingHILPERTSTR 27 64295 GESCHAFTSFUHR, DARMSTADT, Gm$161,868
Agentur Zielgenau GmbhProject MercuryHOUTLAAN 4 6525 XZ, NIJMEGEN, Nl$146,146
Radboud University Medical CenterProject Mercury-$104,065
Revenue and Support

Revenue Composition

Contributions and Grants
$4,438,901
Program Service Revenue
$302,974
Investment Income
$122,391
Other Revenue
$78,305
All Other Contributions
$3,598,473
Change in Net Assets
$-532,705

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
Yes
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Intellectual Property1$676,250Fair Market Value (FMV)
Securities Publicly Traded9$358,595Fair Market Value (FMV)
Total Noncash Contributions10$1,034,845-

Audited Revenue Reconciliation

Revenue per Audited Statements
$4,942,571
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$534,030
Total Revenue per Audited Statements
$5,476,601
Total Revenue per Form 990
$4,942,571
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$2,701,795
Other Expenses$2,495,397
Total Fundraising Expense$629,872
Grants and Similar Amounts Paid$278,084
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$1,141,669$143,839$284,211$1,569,719
Fees for Services Other$827,726$8,250$5,100$841,076
Current Officers, Directors, Trustees, and Key Employees$399,209$228,314$48,982$676,505
Travel$358,200$10,181$39,332$407,713
Conferences and Meetings$385,446-$684$386,130
Information Technology$250,580$26,350$25,332$302,262
Other Employee Benefits$163,140$27,452$40,657$231,249
Payroll Taxes$124,074$30,916$28,267$183,257
Foreign Grants$137,700--$137,700
Grants to Domestic Individuals$132,038--$132,038
Fees for Services Legal$98,458$7,630$704$106,792
Other Expenses$50,664$144$49,642$49,642
Pension Plan Contributions$29,767$3,078$8,220$41,065
Office Expenses$22,637$9,637$6,346$38,620
Depreciation Depletion$36,076--$36,076
Fees for Services Accounting-$22,504-$22,504
All Other Expenses$3,284$16,348$37$19,669
Insurance$2,750$12,012-$14,762
Grants to Domestic Orgs$8,346--$8,346
Total Functional Expenses$4,280,854$564,550$629,872$5,475,276

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$5,792,492
Expenses per Audited Statements$5,475,276
Total Expenses per Form 990$5,475,276
Expenses Not Reported on Form 990$317,216
Expenses Not Reported on Financial Statements$0
International Activity

International Summary

Offices
0
Employees
0
Spending
$431,700

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)Program ServicesCollaborated With European Research Institutions to Collect Patient-level Data Through the Paladin Program, Supporting Trial Readiness and Fshd Therapeutic Development00$294,000
Europe (including Iceland & Greenland) - Albania, Andorra, Austria, BelgiumGrantsN/a00$94,500
South AmericaGrantsN/a00$43,200
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$141,355
Fundraising Direct Expenses$63,050
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Peer to Peer Events$935,663$116,340$8,103$108,237
Other Special Events$46,120$25,015-$25,015
Total Events$981,783$141,355$63,050$78,305
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$142,613
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. Board members robert humphreys jr. And william lewis iii are related as cousins.”

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
2025-05-13
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
23
Volunteers
150

Preparer

Firm
Smith Sullivan & Brown Pc
Address
80 FLANDERS ROAD SUITE 302, WESTBOROUGH, MA 01581
Preparer
Sandra M Brown CPA
Phone
5088717178
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Consultants and professional fees: program service expenses 827,726. Management and general expenses 8,250. Fundraising expenses 5,100. Total expenses 841,076.”

Raw XML AppendixShowing 400 of 882 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/PersonNm2GEORGE POLLOCK JR
IRS990/Form990PartVIISectionAGrp/PersonNm3HOWARD L CHABNER JD
IRS990/Form990PartVIISectionAGrp/PersonNm4JAMES A CHIN SR
IRS990/Form990PartVIISectionAGrp/PersonNm5MEL HAYES
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IRS990/Form990PartVIISectionAGrp/PersonNm7LINDA LAURELLO
IRS990/Form990PartVIISectionAGrp/PersonNm8ROBERT HUMPHREYS JR
IRS990/Form990PartVIISectionAGrp/PersonNm9MICHELLE HELEN MACKAY
IRS990/Form990PartVIISectionAGrp/PersonNm10NEIL ANDREW SOLOMON MD FACP
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IRS990/Form990PartVIISectionAGrp/PersonNm12CHRIS MANCILL
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IRS990/Form990PartVIISectionAGrp/PersonNm16AMY Z BEKIER
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IRS990/Form990PartVIISectionAGrp/PersonNm24BETH JOHNSTON
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IRS990/Form990PartVIISectionAGrp/TitleTxt0FORMER SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt1FORMER TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt2TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt3VICE CHAIRMAN
IRS990/Form990PartVIISectionAGrp/TitleTxt4CHAIRMAN
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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/TitleTxt17BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt18BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt19CHIEF FINANCIAL OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt20CEO & PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt21CHIEF OPERATING OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt22DIRECTOR OF RESEARCH AND PATIENT ENGAGEMENT
IRS990/Form990PartVIISectionAGrp/TitleTxt23CHIEF DEVELOPMENT OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt24CHIEF COMMUNITY ENGAGEMENT OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt25SENIOR DIRECTOR OF RESEARCH AND CARE
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IRS990/MissionDesc0FIND TREATMENTS AND A CURE FOR FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD) WHILE EMPOWERING OUR FAMILIES.
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IRS990/OtherExpensesGrp/Desc0BANK SERVICE CHARGES AN
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