Civic Intelligence

Facioscapulohumeral Society

990 • Fiscal year 2015 • EIN 52-1762747

Jan 01, 2015 to Dec 31, 2015 • Filed on Apr 22, 2016

Organization ProfileWWW.FSHSOCIETY.ORG

View Organization Page

450 Bedford StreetLexington, MA 02420

(781) 301-6060

Siviq Scores

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

Liabilities / Assets

53rd percentile

0.13x

Higher debt load relative to assets than 53% of similar nonprofits.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2015

Liabilities / Revenue

63rd percentile

0.21x

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

2015 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2015

Net Margin

70th percentile

11%

Higher net margin than 70% of similar nonprofits.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2015

Top Officer Pay

86th percentile

$165,915

Higher top officer pay than 86% of similar nonprofits.

Top officer pay equals 8.2% of source-year revenue.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2015

Asset Growth

72nd percentile

9.8%

Faster asset growth than 72% of similar nonprofits.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2014 to 2015

Revenue Growth

52nd percentile

4.2%

Faster revenue growth than 52% of similar nonprofits.

2015 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2014 to 2015

Balance Sheet
Liabilities / Assets53rd percentile

Assets

Up

$3,367,536

Up $300,690 (+9.8%) from 2014

Net Assets

Up

$2,942,234

Up $198,349 (+7.2%) from 2014

Liabilities

Up

$425,302

Up $102,341 (+32%) from 2014

Revenue And Expenses
Liabilities / Revenue63rd percentileNet Margin70th percentile

Revenue

Up

$2,027,670

Up $81,209 (+4.2%) from 2014

Expenses

Up

$1,796,357

Up $232,714 (+15%) from 2014

Net Income

Down

$231,313

Down $151,505 (-40%) from 2014

Historical Trend

Balance Sheet Trend

Asset Growth72nd 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

2015

Assets$3,367,536
Liabilities$425,302
Net Assets$2,942,234
Open 2015 Filing

Operations Trend

Revenue Growth52nd 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

2015

Revenue$2,027,670
Expenses$1,796,357
Net Income$231,313
Open 2015 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2015 to Dec 31, 2015
Signed
Apr 22, 2016
Return Version
2015v2.1
Gross Receipts
$2,229,709
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$1,311,111$1,862,864▲ $551,753
Investments in Publicly Traded Securities$723,719$743,976▲ $20,257
Cash and Non-Interest-Bearing Accounts$902,358$604,614▼ $297,744
Pledges and Grants Receivable$115,857$145,000▲ $29,143
Land, Buildings, and Equipment, Net$8,994$6,758▼ $2,236
Prepaid Expenses and Deferred Charges$4,807$4,324▼ $483
Total Assets$3,066,846$3,367,536▲ $300,690
Liabilities
Grants Payable$286,640$381,118▲ $94,478
Accounts Payable and Accrued Expenses$36,321$44,184▲ $7,863
Total Liabilities$322,961$425,302▲ $102,341
Net Assets / Fund Balance
Unrestricted Net Assets$1,821,563$1,955,607▲ $134,044
Temporarily Rstr Net Assets$848,422$912,727▲ $64,305
Permanently Rstr Net Assets$73,900$73,900→ $0
Total Net Assets Fund Balance$2,743,885$2,942,234▲ $198,349
Total Liabilities and Net Assets / Fund Balance$3,066,846$3,367,536▲ $300,690

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$6,758$16,106$22,864

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2015$89,659-▲ $176$4,000$85,835
2014$87,915-▲ $6,144$4,400$89,659
2013$83,041$150▲ $8,324$3,600$87,915
2012$63,188$11,900▲ $7,953-$83,041
2011-$62,000▲ $1,188-$63,188
Compensation and Service Providers
Top Officer Pay86th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Daniel P PerezPresident & CEOFT$152,029$13,886$165,915
June KinoshitaExecutive DirectorFT$141,222$4,769$145,991

Board Members and Trustees

NameTitle
William R Lewis Sr MdChairman
Howard L Chabner JdVice Chairman
James a Chin SrVice Chairman
Amy Z Bekier MaBoard Member
Carol S Birnbaum MdBoard Member
David J Glass MdBoard Member
E Ann Biggs-williamsBoard Member
L Frank Kolakowski PhdBoard Member
Linda M Laurello-bambarger MbaBoard Member
Louis M Kunkel PhdBoard Member
Michelle Helen Mackay MaBoard Member
William R Lewis Iii MdBoard Member
Nancy PaytonBoard Member (eff. 5/2015)
Stuart LaiBoard Member (eff. 5/2015)
Wendy ShackBoard Member (eff. 5/2015)
Robert F Smith EsqBoard Member (thru. 4/2015)
Beth E Johnston MbaSecretary
Ellen K Hannan MbaTreasurer
Christopher Stenmon CPATreasurer (thru 1/20/2015)
Revenue and Support

Revenue Composition

Contributions and Grants
$2,018,862
Program Service Revenue
$0
Investment Income
$50,318
Other Revenue
$-41,510
All Other Contributions
$1,538,989
Change in Net Assets
$231,313

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,027,670
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$134,163
Total Revenue per Audited Statements
$2,161,833
Total Revenue per Form 990
$2,027,670
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$949,221
Salaries, Compensation, and Employee Benefits$549,472
Other Expenses$297,664
Total Fundraising Expense$102,858
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$652,968--$652,968
Current Officers, Directors, Trustees, and Key Employees$258,459$24,228$37,614$320,301
Foreign Grants$296,253--$296,253
Other Salaries and Wages$93,727$63,245$18,099$175,071
Office Expenses$57,110$22,347$8,591$88,048
Conferences and Meetings$64,967--$64,967
Payroll Taxes$22,879$5,838$3,670$32,387
Other Employee Benefits$13,089$5,741$2,883$21,713
Advertising$21,467--$21,467
Information Technology$15,024$3,834$2,411$21,269
Occupancy$13,436$3,429$2,155$19,020
Fees for Services Legal-$14,293-$14,293
Fees for Services Accounting-$11,763-$11,763
Other Expenses$5,052-$27,378$5,052
Depreciation Depletion-$4,684-$4,684
Insurance$353$2,822$57$3,232
Travel$2,440--$2,440
Total Functional Expenses$1,531,275$162,224$102,858$1,796,357

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$1,963,484
Expenses per Audited Statements$1,796,357
Total Expenses per Form 990$1,796,357
Expenses Not Reported on Form 990$167,127
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of Massachusetts Medical SchoolWorcester, MA501(c)(3)FOR PROJECTS: "PHYSIOLOGICAL STUDIES OF MUSCLE WEAKNESS IN FSHD," "WELLSTONE/RNASE REAGENTS AND SUPPLIES, AND "CHARACTERIZATION OF CORIELL FSHD FAMILY CELL LINES"$235,996
University of Minnesota Lillehei Heart Institute Ccrb 4127Minneapolis, MN501(c)(3)FOR PROJECT: "EXPLOITING GENOME EDITING TECHNOLOGY TO MODIFY AND REGULATE THE FSHD DISEASE LOCUS"$125,000
Fred Hutchinson Cancer Research CenterSeattle, WA501(c)(3)FOR PROJECT: "DETERMINING THE EFFECTIVENESS OF INCREASED SMCHD1 EXPRESSION TO SUPPRESS DUX4 IN FSHD MUSCLE CELLS AND MODEL MICE"$101,132
Johns Hopkins UniversityBaltimore, MD501(c)(3)FOR PROJECT: "DETAILED TRANSCRIPTIONAL ANALYSIS OF STAGE-SPECIFIC EARLY FSHD MYOGENESIS"$70,977
Boston University School of MedicineBoston, MA501(c)(3)FOR PROJECT: "INHIBITED PROTEIN TURNOVER AND TDP-43 AGGREGATION IN FSHD PATHOGENESIS"$68,920
National Disease Research InterchangePhiladelphia, PA501(c)(3)FOR PROJECT: "FSH-NDRI TISSUE PROCUREMENT PROJECT"$43,943
The Jackson LaboratoryBar Harbor, ME501(c)(3)FOR PROJECT: "JAX REPOSITORY COSTS OF STRAIN IMPORTATION, TUPLER HSA-FRG1 MICE TO JAX (JR 27469, 27687, AND 27688) / JONES FLEXDUX4 FSH SOCIETY MICE TO JAX (JR 028710)"$7,000

International Summary

Offices
0
Employees
0
Spending
$296,253

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/a00$296,253
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$82,565
Fundraising Gross Income$41,055
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Songs in the Key of Steven Blier$128,085$15,000$6,045$8,955
Fsh at the Lake$218,160$5,625$730$4,895
Total Events$497,924$38,830$82,565$-43,735
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
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

“William r. Lewis md, chairman, is the father of william r. Lewis iii md, board member.”

Form 990, Part VI, Section A, Line 6

“Per the organization's by-laws there shall be one class of members of the corporation, which class shall consist of individuals and entities who accept the goals and purpose of the corporation, have paid any dues or fees as established by the board of directors, and have met all other requirements of membership, if any, established by the board of directors. Members, as such, shall have no right to vote on any matter regarding the corporation.”

Form 990, Part VI, Section B, Line 11

“The board of directors reviews and approves the form 990 prior to its filing. The form 990 was then authorized and signed by the organization's president.”

Form 990, Part VI, Section B, Line 12C

“The board of directors requires an annual declaration from all board members and senior management as to the existence and disclosure of any potential conflicts of interest. The board members sign a disclosure statement. Any potential conflicts are discussed by the dis-interested board members, while the party in potential conflict is required to leave the room. Board meeting minutes will document the discussion and decision making process. In the event of a potential conflict, procedures to obtain competitive bids and diligence on fair market value will be established.”

Form 990, Part VI, Section B, Line 15

“Fsh 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 forth-upcoming year's annual incentive plan. The board reviews and recommends to the board salary approval and incentive awards for the executive director and selected key senior staff.”

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
Facioscapulohumeral Society
EIN
52-1762747
Phone
7813016060
Address
450 BEDFORD STREET, LEXINGTON, MA 02420
Doing Business As
Fsh Society

Signing Officer

Name
Daniel P Perez
Title
President & CEO
Phone
7813016060
Signed
2016-04-22
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Daniel P Perez
Formed
1991
Legal Domicile
Dc
Voting Board Members
17
Independent Board Members
17
Employees
5
Volunteers
100

Preparer

Firm
Smith Sullivan & Brown Pc
Address
80 FLANDERS ROAD - SUITE 200, WESTBOROUGH, MA 01581
Preparer
Maureen L Sullivan CPA
Phone
5088717178
Raw XML AppendixShowing 400 of 782 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, UNDERSTANDING OF AND CONDUCT RESEARCH ON FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY.
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IRS990/Desc0RESEARCH THE FSH SOCIETY IS A WORLD LEADER IN COMBATING FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSH MUSCULAR DYSTROPHY OR FSHD). THE SOCIETY HELPS PATIENTS AND FAMILIES THROUGH OUTREACH, EDUCATION AND SUPPORT; FUNDS SCIENTIFIC RESEARCH THAT IS RIGOROUSLY REVIEWED BY ITS SCIENTIFIC ADVISORY BOARD (SAB); AND ADVOCATES FOR INCREASED GOVERNMENT AND INDUSTRY INVESTMENT IN RESEARCH AND THERAPY DEVELOPMENT.FSHD, A HERITABLE DISEASE, IS AMONG THE MOST COMMON FORMS OF MUSCULAR DYSTROPHY, AFFECTING APPROXIMATELY 870,000 CHILDREN AND ADULTS OF BOTH SEXES WORLDWIDE. IT CAN AFFECT MULTIPLE GENERATIONS AND ENTIRE FAMILIES. FSHD IS CHARACTERIZED BY THE PROGRESSIVE LOSS OF MUSCLE STRENGTH. MUSCLE WEAKNESS TYPICALLY STARTS AT THE FACE, SHOULDER GIRDLE AND UPPER ARMS, OFTEN PROGRESSING TO THE LEGS, TORSO AND OTHER MUSCLES. THE SYMPTOMS CAN DEVELOP AT ANY AGE. ABOUT 4 PERCENT OF CASES ARE CHILDREN UNDER AGE FIVE. THESE EARLY-ONSET PATIENTS ARE AT SIGNIFICANTLY GREATER RISK OF HAVING MORE SEVERE SYMPTOMS AND ADDED HEALTH COMPLICATIONS.THE PROGRESSION OF FSHD IS HIGHLY VARIABLE. FSHD HAS A HIGH BURDEN OF DISEASE AND CAN CAUSE SIGNIFICANT DISABILITY AND, IN SEVERELY AFFECTED INDIVIDUALS, PREMATURE DEATH, MAINLY THROUGH RESPIRATORY FAILURE. AROUND 20% OF AFFECTED INDIVIDUALS USE A WHEELCHAIR OR SCOOTER. BESIDES MUSCLE WEAKNESS, FSHD CAN ALSO HAVE THE FOLLOWING MANIFESTATIONS: HIGH-FREQUENCY SENSORINEURAL HEARING LOSS, RESPIRATORY INSUFFICIENCY, ABNORMALITIES OF BLOOD VESSELS IN THE BACK OF THE EYE, AND NON-SYMPTOMATIC CARDIAC ARRHYTHMIAS. ORGANIZING AND FUNDING RESEARCH INTO THE CAUSES OF FSHD, AND, ULTIMATELY, DEVELOPING TREATMENTS AND A CURE, IS THE SOCIETY'S CORE MISSION. AS OF FEBRUARY 2016, THE SOCIETY HAS FUNDED A CUMULATIVE TOTAL OF AROUND $6.85 MILLION IN GRANTS FOR BASIC AND TRANSLATIONAL RESEARCH. THE AMOUNT FUNDED HAS INCREASED YEAR-OVER-YEAR SINCE 2008. IN 2015, THE SOCIETY AWARDED 12 NEW RESEARCH GRANTS, CONTINUED FUNDING FIVE ONGOING GRANTS, AND ISSUED THREE TRAVEL GRANTS. (FOR CURRENT GRANT FUNDING, SEE NOTE 15.)FSH SOCIETY GRANTS HAVE LED TO HUNDREDS OF PUBLICATIONS ACKNOWLEDGING SOCIETY SUPPORT IN TOP-TIER SCIENTIFIC JOURNALS. RESEARCH FUNDED IN PART BY THE SOCIETY HAS LED TO THE IDENTIFICATION OF TWO GENES THAT, TOGETHER WITH OTHER FACTORS, CAUSE FSHD. ONE OF THE MOST COMPLEX DISEASE-CAUSING GENETIC MECHANISMS KNOWN TO SCIENCE IS AT THE HEART OF FSHD. MUCH HAS BEEN DISCOVERED, YET MUCH STILL REMAINS TO BE LEARNED. DISCOVERIES FROM FSHD COULD BENEFIT A WIDE RANGE OF OTHER AREAS OF MEDICINE, INCLUDING CANCER AND DIABETES. RECENT SOCIETY-FUNDED PROJECTS INCLUDE GENOMIC ENGINEERING, DEVELOPING NEW METHODS TO MEASURE DISEASE PROGRESSION, AND IDENTIFYING POTENTIAL THERAPEUTIC TARGETS TO INTERFERE WITH THE EXPRESSION OF THESE GENES. THE FSH SOCIETY'S WORLD-CLASS SAB PROVIDES STRATEGY FOR FSHD RESEARCH, THERAPEUTICS AND CLINICAL TRIALS READINESS, RECRUITS RESEARCHERS, EVALUATES GRANT PROPOSALS AND MONITORS THE PROGRESS OF RESEARCH PROJECTS. THE SOCIETY HAS HELPED FACILITATE THE PRODUCTION OF THE WORLD'S LARGEST RESOURCE FOR FSHD BIOMATERIALS, WHICH ARE BEING MADE AVAILABLE TO RESEARCHERS THROUGHOUT THE WORLD. THE SOCIETY WORKS WITH INSTITUTIONS DOING CLINICAL RESEARCH BY HELPING RECRUIT PATIENTS FOR STUDIES AND FOR TISSUE AND BLOOD DONATION, AND FACILITATES PATIENT TRAVEL BY COVERING TRAVEL AND LODGING EXPENSES FOR THOSE PATIENTS WHO WOULD NOT OTHERWISE BE ABLE TO PARTICIPATE.
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IRS990/Form990PartVIISectionAGrp/PersonNm4BETH E JOHNSTON MBA
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IRS990/Form990PartVIISectionAGrp/PersonNm10LOUIS M KUNKEL PHD
IRS990/Form990PartVIISectionAGrp/PersonNm11NANCY PAYTON
IRS990/Form990PartVIISectionAGrp/PersonNm12WILLIAM R LEWIS III MD
IRS990/Form990PartVIISectionAGrp/PersonNm13MICHELLE HELEN MACKAY MA
IRS990/Form990PartVIISectionAGrp/PersonNm14WENDY SHACK
IRS990/Form990PartVIISectionAGrp/PersonNm15ROBERT F SMITH ESQ
IRS990/Form990PartVIISectionAGrp/PersonNm16L FRANK KOLAKOWSKI PHD
IRS990/Form990PartVIISectionAGrp/PersonNm17LINDA M LAURELLO-BAMBARGER MBA
IRS990/Form990PartVIISectionAGrp/PersonNm18CHRISTOPHER STENMON CPA
IRS990/Form990PartVIISectionAGrp/PersonNm19DANIEL P PEREZ
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IRS990/Form990PartVIISectionAGrp/TitleTxt4SECRETARY
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IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7BOARD MEMBER
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IRS990/Form990PartVIISectionAGrp/TitleTxt10BOARD MEMBER
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IRS990/Form990PartVIISectionAGrp/TitleTxt12BOARD MEMBER
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IRS990/Form990PartVIISectionAGrp/TitleTxt16BOARD MEMBER
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IRS990/Form990PartVIISectionAGrp/TitleTxt19PRESIDENT & CEO
IRS990/Form990PartVIISectionAGrp/TitleTxt20EXECUTIVE DIRECTOR
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IRS990/MissionDesc0TO 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.
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IRS990/PrincipalOfficerNm0DANIEL P PEREZ
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IRS990/ProgSrvcAccomActy2Grp/Desc0MEETINGS, SYMPOSIUMS AND WORKSHOPSHELD ANNUALLY SINCE 1994, THE FSH SOCIETY'S INTERNATIONAL RESEARCH CONSORTIUM CONFERENCE YIELDS IMMEASURABLE GAINS IN ADVANCING UNDERSTANDING OF FSHD. THE 2015 CONFERENCE WAS ATTENDED BY 125 SCIENTISTS, CLINICIANS, RESEARCHERS, PHARMACEUTICAL REPRESENTATIVES AND FSHD PATIENTS FROM OVER 11 COUNTRIES; GREAT PROGRESS WAS MADE. IN NOVEMBER 2016, THE FSH SOCIETY INTERNATIONAL PATIENT RESEARCHER NETWORK DAY (FSHD CONNECT) WILL BE HELD IN BOSTON. THE SOCIETY HOPES TO HAVE MORE THAN 300 PATIENTS, FAMILY MEMBERS, FRIENDS, SCIENTISTS AND RESEARCHERS GATHERED TO LISTEN TO THE LATEST DEVELOPMENTS. THE MAIN FOCUS IS FOR MEDICAL PROFESSIONALS, PATIENTS AND FAMILIES TO BE ABLE TO SHARE IDEAS ON THE DISEASE IN A COLLEGIAL SETTING, AND TO SUPPORT AND INSPIRE EACH OTHER. THIS CONFERENCE HAS BEEN HELD BIENNIALLY SINCE 1997.THE SOCIETY ALSO SPONSORS AND OPERATES PATIENT SUPPORT AND EDUCATION GROUPS IN VARIOUS CITIES IN THE US. IN ADDITION, IN 2015 THE SOCIETY CONTINUED ITS ACTIVE ROLE IN CO-CONVENING "FSHD CHAMPIONS," AN INTERNATIONAL ALLIANCE OF FSHD ORGANIZATIONS THAT WORK TOGETHER ON FSHD RESEARCH, ADVOCACY AND AWARENESS.
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IRS990/ProgSrvcAccomActy3Grp/Desc0EDUCATION, ADVOCACY AND COMMUNITY ACTIONTHROUGH ITS STAFF, WEBSITE WWW.FSHSOCIETY.ORG, SOCIAL MEDIA AND "FSH WATCH" NEWSLETTER, THE FSH SOCIETY PROVIDES INFORMATION ABOUT FSHD, THE SCIENCE BEHIND IT, AND PRACTICAL ADVICE AND EMOTIONAL SUPPORT ON HOW TO LIVE WITH THE DISEASE. THE SOCIETY RESPONDS TO INQUIRIES FROM NEWLY DIAGNOSED PATIENTS, THEIR SPOUSES AND FAMILY MEMBERS, AND MEDICAL PROFESSIONALS ON A DAILY BASIS. THE SOCIETY CONTINUES TO DEVELOP, UPDATE AND DISSEMINATE BROCHURES AND OTHER WRITTEN MATERIALS, VIDEOS, PHOTOGRAPHS, ADVERTISEMENTS, SOCIAL MEDIA POSTINGS AND NATIONALLY BROADCAST PSAS DEPICTING WHAT FSHD IS AND WHAT IT IS LIKE TO LIVE WITH THE DISEASE. IN 2015 AND PREVIOUS YEARS, THE SOCIETY HAS BEEN FORTUNATE TO RECEIVE PUBLIC RELATIONS EXPERTISE, AND SOCIAL MEDIA AND MARKETING SERVICES, GENEROUSLY DONATED BY THE FIRM SHIFT COMMUNICATIONS. IN 2015, THE SOCIETY WORKED WITH PHARMACEUTICAL COMPANIES COMMENCING CLINICAL TRIALS IN EUROPE AND, IN 2016, IN THE US. IT MET WITH VENTURE CAPITAL COMPANIES TO PROVIDE BACKGROUND AND EDUCATION ON THE DISEASE.
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Document Assets

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Filings

Displayed year

2015 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$3,367,536
Liabilities
$425,302
Net assets
$2,942,234
Revenue
$2,027,670
Expenses
$1,796,357
Net income
$231,313
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