Civic Intelligence

Facioscapulohumeral Society

990 • Fiscal year 2016 • EIN 52-1762747

Jan 01, 2016 to Dec 31, 2016 • Filed on Apr 05, 2017

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

63rd percentile

0.21x

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

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Liabilities / Revenue

71st percentile

0.34x

Higher debt load relative to revenue than 71% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Net Margin

18th percentile

-16%

Higher net margin than 18% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Top Officer Pay

86th percentile

$164,940

Higher top officer pay than 86% of similar nonprofits.

Top officer pay equals 8.0% of source-year revenue.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Asset Growth

42nd percentile

-0.6%

Faster asset growth than 42% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2015 to 2016

Revenue Growth

48th percentile

2.1%

Faster revenue growth than 48% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2015 to 2016

Balance Sheet
Liabilities / Assets63rd percentile

Assets

Down

$3,349,003

Down $18,533 (-0.6%) from 2015

Net Assets

Down

$2,642,967

Down $299,267 (-10%) from 2015

Liabilities

Up

$706,036

Up $280,734 (+66%) from 2015

Revenue And Expenses
Liabilities / Revenue71st percentileNet Margin18th percentile

Revenue

Up

$2,070,651

Up $42,981 (+2.1%) from 2015

Expenses

Up

$2,391,954

Up $595,597 (+33%) from 2015

Net Income

Down

-$321,303

Down $552,616 (-239%) from 2015

Historical Trend

Balance Sheet Trend

Asset Growth42nd 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

2016

Assets$3,349,003
Liabilities$706,036
Net Assets$2,642,967
Open 2016 Filing

Operations Trend

Revenue Growth48th 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

2016

Revenue$2,070,651
Expenses$2,391,954
Net Income-$321,303
Open 2016 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2016 to Dec 31, 2016
Signed
Apr 5, 2017
Return Version
2016v3.0
Gross Receipts
$2,272,256
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$1,862,864$2,295,337▲ $432,473
Investments in Publicly Traded Securities$743,976$954,883▲ $210,907
Cash and Non-Interest-Bearing Accounts$604,614--
Pledges and Grants Receivable$145,000$46,000▼ $99,000
Land, Buildings, and Equipment, Net$6,758$23,556▲ $16,798
Prepaid Expenses and Deferred Charges$4,324$15,250▲ $10,926
Total Assets$3,367,536$3,349,003▼ $18,533
Other Assets Total$0$13,977▲ $13,977
Liabilities
Grants Payable$381,118$493,751▲ $112,633
Other Liabilities$0$127,367▲ $127,367
Accounts Payable and Accrued Expenses$44,184$84,918▲ $40,734
Total Liabilities$425,302$706,036▲ $280,734
Net Assets / Fund Balance
Unrestricted Net Assets$1,955,607$1,651,540▼ $304,067
Permanently Rstr Net Assets$73,900$928,079▲ $854,179
Temporarily Rstr Net Assets$912,727$63,348▼ $849,379
Total Net Assets Fund Balance$2,942,234$2,642,967▼ $299,267
Total Liabilities and Net Assets / Fund Balance$3,367,536$3,349,003▼ $18,533

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$16,653$16,424$33,077
Leasehold Improvements$6,903$197$7,100

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2016$85,835$854,179▲ $55,869$36,000$959,883
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
Compensation and Service Providers
Top Officer Pay86th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Daniel P PerezCEO & PresidentFT$151,092$13,848$164,940
June KinoshitaChief Operating OfficerFT$134,482$4,985$139,467
Beth E Johnston MbaFormer Secretary/development OfficerPT$29,273$1,081$30,354

Board Members and Trustees

NameTitle
William R Lewis Sr MdChairman
Howard L Chabner JdVice Chairman
James a Chin SrVice Chairman
Carol S Birnbaum MdBoard Member
Christine FordBoard Member
David J Glass MdBoard Member
George Pollock JrBoard Member
Lee Frank Kolakowski PhdBoard Member
Linda M Laurello-bambarger MbaBoard Member
Louis M Kunkel PhdBoard Member
Michelle Helen Mackay MaBoard Member
Nancy PaytonBoard Member
Neil Andrew Solomon Md FacpBoard Member
Stuart LaiBoard Member
Thomas F RuekertBoard Member
Wendy ShackBoard Member
William R Lewis Iii MdBoard Member
E Ann Biggs-williamsFormer Board Member
Amy Z Bekier MaSecretary
Ellen K Hannan MbaTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$2,150,152
Program Service Revenue
$0
Investment Income
$34,476
Other Revenue
$-113,977
All Other Contributions
$1,708,940
Change in Net Assets
$-321,303

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,070,651
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$170,605
Total Revenue per Audited Statements
$2,241,256
Total Revenue per Form 990
$2,070,651
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$1,383,892
Salaries, Compensation, and Employee Benefits$559,254
Other Expenses$448,808
Total Fundraising Expense$158,759
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$1,044,479--$1,044,479
Foreign Grants$339,413--$339,413
Other Salaries and Wages$195,514$87,498$29,671$312,683
Current Officers, Directors, Trustees, and Key Employees$155,428$14,105$25,761$195,294
Conferences and Meetings$112,282--$112,282
Travel$35,063$222$11,913$47,198
Office Expenses$26,409$7,854$3,718$37,981
Payroll Taxes$23,957$7,126$3,846$34,929
Information Technology$22,701$6,753$3,644$33,098
Fees for Services Other-$5,958$20,990$26,948
Occupancy$13,753$4,145$2,208$20,106
All Other Expenses$16,303$2,577$986$19,866
Advertising$17,538--$17,538
Other Employee Benefits$8,740$5,241$2,367$16,348
Fees for Services Legal-$13,338-$13,338
Fees for Services Accounting-$13,000-$13,000
Other Expenses$791$6,268$606$7,665
Insurance-$2,950-$2,950
Depreciation Depletion-$2,455-$2,455
Total Functional Expenses$2,047,041$186,154$158,759$2,391,954

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,540,523
Expenses per Audited Statements$2,391,954
Total Expenses per Form 990$2,391,954
Expenses Not Reported on Form 990$148,569
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of Nevada RenoReno, NV501(c)(3)Crispr Approaches Targeting Dux4 in Vivo$240,014
University of Ma Medical SchoolWorcester, MA501(c)(3)Investigation of 4-methylumbelliferone as a C1qbp-targeting Fshd Therapeutic$150,000
University of MarylandBaltimore, MD501(c)(3)Assessing the Patholigical Role of Dux4 in a Humanized Mouse Model of Fshd$134,728
University of KansasFairway, KS501(c)(3)To Develop a Fshd Clinical Trial Research Network$121,000
THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501(c)(3)Micro Rnas as Potential Modifiers of Fshd$90,000
BOSTON CHILDREN'S HOSPITALBoston, MA501(c)(3)A Genome-wide Crispr Knock-out Strategy to Identify Modifiers of Fshd$78,000
RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501(c)(3)Protein Chemistry and Protein-protein Interactions of Dux4$70,000
Fred Hutchinson Cancer Research CenterSeattle, WA501(c)(3)Novel Role for Reduced Rna Quality Control in Fshd Pathogenesis$59,225
University of KansasFairway, KS501(c)(3)To Determine the Initial Responsiveness to Fshd Disease Progression of a System of Synchronized Wireless Motion Sensors$39,044
RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501(c)(3)Characterization of a Tamoxifen-inducible Dux4 Knockin Mouse$25,000
Moser Hugo W Research InstituteBaltimore, MD501(c)(3)A Fellowship Grant to Study Fshd at the Kennedy Grieger Institute$21,592
University of NevadaReno, NV501(c)(3)Phisiological Assessment of a Novel Inducible Mouse Model for Fshd$9,900
University of RochesterRochester, NY501(c)(3)Optimizing the Utility of the National Registry for Fshd Research and Trial Recruitment$5,976

International Summary

Offices
0
Employees
0
Spending
$339,413

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$219,413
South AmericaGrantsN/a00$120,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$165,412
Fundraising Gross Income$51,435
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Fsh at the Lake$121,028-$0-
Curefshd Gala$119,880$36,000$34,171$1,829
Total Events$447,800$51,435$165,412$-113,977
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 Grants Payable$127,367
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
Yes
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. Board members james chin and christine ford are brother-in-law and sister-in-law. Board members neil solomon and carol birnbaum are brother-in-law and sister-in-law.”

Form 990, Part VI, Section A, Line 4

“Effective december 2016, the organization approved amended bylaws. The bylaws were primarily updated to allow for a finance committee charter and to amend the personnel authorized to bind the organization.”

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 11B

“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 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

“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 vii, section a: beth johnston was an officer and director for part of 2016. Beth johnston resigned on march 20, 2016. Beth was hired by the society on august 9, 2016 as a development officer.”

Form 990, Part VI, Section C, Line 19

“Upon request, available on organization's website and the form 990 is available through guidestar website and certain state websites.”

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
CEO & President
Phone
7813016060
Signed
2017-04-05
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Daniel P Perez
Formed
1991
Legal Domicile
Dc
Voting Board Members
19
Independent Board Members
19
Employees
8
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 893 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. ORGANIZING AND FUNDING RESEARCH INTO THE CAUSES OF FSHD, AND, ULTIMATELY, DEVELOPING TREATMENTS AND A CURE, IS THE SOCIETY'S CORE MISSION. AS OF MARCH 2017, THE SOCIETY HAS FUNDED A CUMULATIVE TOTAL OF AROUND $7.3 MILLION IN GRANTS FOR BASIC AND TRANSLATIONAL RESEARCH. THE AMOUNT FUNDED HAS INCREASED YEAR-OVER-YEAR SINCE 2008. IN 2016, THE SOCIETY AWARDED 15 NEW RESEARCH GRANTS, CONTINUED FUNDING SEVEN ONGOING GRANTS, AND ISSUED FOUR TRAVEL GRANTS. 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 ALLOWING FOR BIOMATERIALS ACCESS THROUGH TISSUE DONATION PROGRAMS, DEVELOPING CELL LINES FOR RESEARCH, CREATING TRANSGENIC MOUSE MODELS FOR RESEARCH, GENOMIC ENGINEERING, DEVELOPING NEW METHODS TO MEASURE DISEASE PROGRESSION, IDENTIFYING POTENTIAL THERAPEUTIC TARGETS TO INTERFERE WITH THE EXPRESSION OF THESE GENES AND CLINICAL TRIAL READINESS NETWORK. 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. HELD ANNUALLY SINCE 1994, THE FSH SOCIETY'S INTERNATIONAL RESEARCH CONSORTIUM CONFERENCE YIELDS IMMEASURABLE GAINS IN ADVANCING UNDERSTANDING OF FSHD. THE NOVEMBER 2016 RESEARCH-CONNECT CONFERENCE HELD IN BOSTON, MASSACHUSETTS WAS ATTENDED BY 125 SCIENTISTS, CLINICIANS, RESEARCHERS, PHARMACEUTICAL REPRESENTATIVES AND FSHD PATIENTS FROM OVER 15 COUNTRIES; GREAT PROGRESS WAS MADE. RESEARCH PRIORITIES WERE DISCUSSED, DEFINED AND PUBLISHED ON THE FSH SOCIETY WEBSITE. THESE PRIORITIES ARE ALSO HIGHLIGHTED IN THE SOCIETY'S GRANT APPLICATION PROCESS AS PRIORITIES AREAS FOR FUNDING.
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IRS990/Form990PartVIISectionAGrp/PersonNm2JAMES A CHIN SR
IRS990/Form990PartVIISectionAGrp/PersonNm3ELLEN K HANNAN MBA
IRS990/Form990PartVIISectionAGrp/PersonNm4BETH E JOHNSTON MBA
IRS990/Form990PartVIISectionAGrp/PersonNm5CAROL S BIRNBAUM MD
IRS990/Form990PartVIISectionAGrp/PersonNm6E ANN BIGGS-WILLIAMS
IRS990/Form990PartVIISectionAGrp/PersonNm7AMY Z BEKIER MA
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IRS990/Form990PartVIISectionAGrp/PersonNm9STUART LAI
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/PersonNm15LEE FRANK KOLAKOWSKI PHD
IRS990/Form990PartVIISectionAGrp/PersonNm16LINDA M LAURELLO-BAMBARGER MBA
IRS990/Form990PartVIISectionAGrp/PersonNm17CHRISTINE FORD
IRS990/Form990PartVIISectionAGrp/PersonNm18GEORGE POLLOCK JR
IRS990/Form990PartVIISectionAGrp/PersonNm19THOMAS F RUEKERT
IRS990/Form990PartVIISectionAGrp/PersonNm20NEIL ANDREW SOLOMON MD FACP
IRS990/Form990PartVIISectionAGrp/PersonNm21DANIEL P PEREZ
IRS990/Form990PartVIISectionAGrp/PersonNm22JUNE KINOSHITA
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IRS990/Form990PartVIISectionAGrp/TitleTxt4FORMER SECRETARY/DEVELOPMENT OFFICER
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IRS990/Form990PartVIISectionAGrp/TitleTxt6FORMER BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7SECRETARY
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IRS990/Form990PartVIISectionAGrp/TitleTxt9BOARD MEMBER
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IRS990/MinutesOfCommitteesInd01
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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/NondeductibleContributionsInd00
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IRS990/OccupancyGrp/ManagementAndGeneralAmt04145
IRS990/OccupancyGrp/ProgramServicesAmt013753
IRS990/OccupancyGrp/TotalAmt020106
IRS990/OfficeExpensesGrp/FundraisingAmt03718
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt07854
IRS990/OfficeExpensesGrp/ProgramServicesAmt026409
IRS990/OfficeExpensesGrp/TotalAmt037981
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IRS990/OperateHospitalInd00
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IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt05241
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt08740
IRS990/OtherEmployeeBenefitsGrp/TotalAmt016348
IRS990/OtherExpensesGrp/Desc0PRINTING
IRS990/OtherExpensesGrp/Desc1BANK SERVICE CHARGES AN
IRS990/OtherExpensesGrp/Desc2FUNDRAISING EXPENSES
IRS990/OtherExpensesGrp/Desc3DIRECTORS EXPENSES
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IRS990/OtherExpensesGrp/FundraisingAmt118512
IRS990/OtherExpensesGrp/FundraisingAmt216023
IRS990/OtherExpensesGrp/FundraisingAmt3606
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IRS990/OtherExpensesGrp/ManagementAndGeneralAmt13909
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt26268
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IRS990/OtherExpensesGrp/ProgramServicesAmt12471
IRS990/OtherExpensesGrp/ProgramServicesAmt2791
IRS990/OtherExpensesGrp/TotalAmt053468
IRS990/OtherExpensesGrp/TotalAmt124892
IRS990/OtherExpensesGrp/TotalAmt216023
IRS990/OtherExpensesGrp/TotalAmt37665
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IRS990/OtherLiabilitiesGrp/EOYAmt0127367
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt029671
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt087498
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0195514
IRS990/OtherSalariesAndWagesGrp/TotalAmt0312683
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IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt07126
IRS990/PayrollTaxesGrp/ProgramServicesAmt023957
IRS990/PayrollTaxesGrp/TotalAmt034929
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IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt015250
IRS990/PrincipalOfficerNm0DANIEL P PEREZ
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IRS990/ProgSrvcAccomActy2Grp/Desc0PATIENT ADVOCACY AND EDUCATIONTHE 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. THROUGH 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 2016 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 NOVEMBER 2016, THE FSH SOCIETY INTERNATIONAL PATIENT RESEARCHER NETWORK DAY (FSHD CONNECT) WAS HELD IN BOSTON. THE SOCIETY HAD 280 PATIENTS, FAMILY MEMBERS, FRIENDS, SCIENTISTS, AND RESEARCHERS GATHERED TO LISTEN TO THE LATEST DEVELOPMENTS AND TO CELEBRATE 25 YEARS OF EXCELLENT EFFORTS. THE MAIN FOCUS OF THIS PATIENT-CONNECT MEETING 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 1994. THE SOCIETY ALSO SPONSORS AND OPERATES PATIENT SUPPORT AND EDUCATION GROUPS IN VARIOUS CITIES IN THE US. IN ADDITION, IN 2016 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. IN 2016 AND 2017, THE SOCIETY WORKED WITH AND CONTINUES TO WORK WITH PHARMACEUTICAL COMPANIES COMMENCING CLINICAL TRIALS IN EUROPE AND, IN THE US. IT MET WITH AND CONTINUES TO MEET WITH INDUSTRY AND VENTURE CAPITAL COMPANIES TO PROVIDE BACKGROUND AND EDUCATION ON THE DISEASE.
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IRS990/PYInvestmentIncomeAmt050318
IRS990/PYOtherExpensesAmt0297664
IRS990/PYOtherRevenueAmt0-41510
IRS990/PYProgramServiceRevenueAmt00
IRS990/PYRevenuesLessExpensesAmt0231313
IRS990/PYSalariesCompEmpBnftPaidAmt0549472
IRS990/PYTotalExpensesAmt01796357

Document Assets

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Filings

Displayed year

2016 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$3,349,003
Liabilities
$706,036
Net assets
$2,642,967
Revenue
$2,070,651
Expenses
$2,391,954
Net income
-$321,303
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