Civic Intelligence

Facioscapulohumeral Society

990 • Fiscal year 2014 • EIN 52-1762747

Jan 01, 2014 to Dec 31, 2014 • Filed on May 08, 2015

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

49th percentile

0.11x

Higher debt load relative to assets than 49% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Liabilities / Revenue

58th percentile

0.17x

Higher debt load relative to revenue than 58% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Net Margin

78th percentile

20%

Higher net margin than 78% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Top Officer Pay

81st percentile

$132,165

Higher top officer pay than 81% of similar nonprofits.

Top officer pay equals 6.8% of source-year revenue.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Asset Growth

83rd percentile

22%

Faster asset growth than 83% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2013 to 2014

Revenue Growth

72nd percentile

16%

Faster revenue growth than 72% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2013 to 2014

Balance Sheet
Liabilities / Assets49th percentile

Assets

Up

$3,066,846

Up $557,864 (+22%) from 2013

Net Assets

Up

$2,743,885

Up $376,310 (+16%) from 2013

Liabilities

Up

$322,961

Up $181,554 (+128%) from 2013

Revenue And Expenses
Liabilities / Revenue58th percentileNet Margin78th percentile

Revenue

Up

$1,946,461

Up $273,714 (+16%) from 2013

Expenses

Up

$1,563,643

Up $253,898 (+19%) from 2013

Net Income

Up

$382,818

Up $19,816 (+5.5%) from 2013

Historical Trend

Balance Sheet Trend

Asset Growth83rd 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

2014

Assets$3,066,846
Liabilities$322,961
Net Assets$2,743,885
Open 2014 Filing

Operations Trend

Revenue Growth72nd 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

2014

Revenue$1,946,461
Expenses$1,563,643
Net Income$382,818
Open 2014 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2014 to Dec 31, 2014
Signed
May 8, 2015
Return Version
2014v5.0
Gross Receipts
$2,090,387
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$1,282,469$1,311,111▲ $28,642
Cash and Non-Interest-Bearing Accounts$527,899$902,358▲ $374,459
Investments in Publicly Traded Securities$661,049$723,719▲ $62,670
Pledges and Grants Receivable$25,000$115,857▲ $90,857
Land, Buildings, and Equipment, Net$8,973$8,994▲ $21
Prepaid Expenses and Deferred Charges$3,592$4,807▲ $1,215
Total Assets$2,508,982$3,066,846▲ $557,864
Liabilities
Grants Payable$105,866$286,640▲ $180,774
Accounts Payable and Accrued Expenses$35,541$36,321▲ $780
Total Liabilities$141,407$322,961▲ $181,554
Net Assets / Fund Balance
Unrestricted Net Assets$1,355,585$1,821,563▲ $465,978
Temporarily Rstr Net Assets$938,090$848,422▼ $89,668
Permanently Rstr Net Assets$73,900$73,900→ $0
Total Net Assets Fund Balance$2,367,575$2,743,885▲ $376,310
Total Liabilities and Net Assets / Fund Balance$2,508,982$3,066,846▲ $557,864

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$8,994$51,701$60,695

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
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 Pay81st percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
June KinoshitaExecutive DirectorFT$128,758$3,407$132,165
Daniel P PerezPresident & CEOFT$125,949$3,876$129,825

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
Ellen HannanBoard Member
L Frank Kolakowski PhdBoard Member
Linda M Laurello-bamberger MbaBoard Member
Louis M Kunkel PhdBoard Member
Michelle Helen Mackay MaBoard Member
Robert F Smith EsqBoard Member
William R Lewis Iii MdBoard Member
Ida LaurelloBoard Member (ret. 12/2014)
Judith Seslowe MaBoard Member (ret. 12/2014)
William Steven HerzbergBoard Member (ret. 5/2014)
Beth E Johnston MbaSecretary
Christopher Stenmon CPATreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,982,674
Program Service Revenue
$0
Investment Income
$46,663
Other Revenue
$-82,876
All Other Contributions
$1,277,374
Change in Net Assets
$382,818

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,946,461
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$227,283
Total Revenue per Audited Statements
$2,173,744
Total Revenue per Form 990
$1,946,461
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$819,261
Other Expenses$389,805
Salaries, Compensation, and Employee Benefits$354,577
Total Fundraising Expense$56,945
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$485,355--$485,355
Foreign Grants$333,906--$333,906
Current Officers, Directors, Trustees, and Key Employees$214,866$17,308$19,643$251,817
Conferences and Meetings$178,350--$178,350
Office Expenses$68,262$5,824$13,566$87,652
Other Salaries and Wages$48,265$8,488$2,943$59,696
Payroll Taxes$19,344$1,918$1,647$22,909
Other Employee Benefits$16,925$1,977$1,253$20,155
Occupancy$16,060$1,593$1,367$19,020
Fees for Services Accounting-$18,353-$18,353
Information Technology$14,917$1,479$1,270$17,666
Fees for Services Legal-$8,609-$8,609
Other Expenses$7,049-$15,217$7,049
Depreciation Depletion-$5,507-$5,507
Travel$2,615--$2,615
Insurance$372$2,097$39$2,508
Total Functional Expenses$1,433,545$73,153$56,945$1,563,643

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$1,797,434
Expenses per Audited Statements$1,563,643
Total Expenses per Form 990$1,563,643
Expenses Not Reported on Form 990$233,791
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
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: "NOVEL ROLE FOR REDUCED RNA QUALITY CONTROL IN FSHD PATHOGENESIS" AND PROJECT: "FSH SOCIETY EDWARD SCHECHTER MEMORIAL RESEARCH FELLOWSHIP FUNDS FOR TRAVEL/REGISTRATION TO JOIN THE 2014 COLD SPRING HARBOR GERM CELL AND SYSTEM BIOLOGY CONFERENCES, HELD OCTOBER 7-11, 2014"$116,725
CHILDREN'S RESEARCH INSTITUTEWashington, DC501(c)(3)FOR PROJECT: "INVESTIGATING THE EFFECTS OF PARP1 INHIBITORS IN DUX4 FSHD EXPRESSION"$89,267
THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501(c)(3)FOR PROJECT: "PROTEIN CHEMISTRY AND PROTEIN-PROTEIN INTERACTIONS OF DUX4"$70,000
Saint Louis University Center for World Health & MedicineSaint Louis, MO501(c)(3)FOR PROJECT: "BET PROTEINS AS THERAPEUTIC TARGETS IN FSHD"$51,425
University of RochesterRochester, NY501(c)(3)FOR PROJECT: "EVALUATION OF AN FSHD-SPECIFIC PATIENT REPORTED OUTCOME MEASURE AND A DISEASE SPECIFIC FUNCTIONAL RATING SCALE" AND PROJECT: "FSHD CLINICAL TRIALS NETWORK"$25,000
University of Massachusetts Medical SchoolWorcester, MA501(c)(3)FOR PROJECT: "FSH SOCIETY KIICHI ARAHATA, M.D. MEMORIAL TRAVEL FELLOWSHIP FUNDS FOR TRAVEL TO 2014 INTERNATIONAL CONGRESS ON NEUROMUSCULAR DISEASES IN NICE, FRANCE RUNNING JULY 5-10"$5,958

International Summary

Offices
0
Employees
0
Spending
$333,906

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$333,906
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$143,926
Fundraising Gross Income$61,050
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Festival of Song$267,794$31,250$22,495$8,755
Fsh at the Lake$152,363$5,650$101$5,549
Total Events$761,649$61,050$143,926$-82,876
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 2

“Linda laurello-bamberger, board member, is board member ida laurello's granddaughter.”

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
2015-05-08
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
4
Volunteers
125

Preparer

Firm
Smith Sullivan & Brown Pc
Address
80 FLANDERS ROAD - SUITE 200, WESTBOROUGH, MA 01581
Preparer
Maureen L Sullivan CPA
Phone
5088717178
Supplemental Narrative

Financial Statement Notes

PART X, LINE 2:

“Tax position: the organization currently evaluates all tax positions, and makes a determination regarding the likelihood of those positions being upheld under review. The primary tax positions made by the organization are the nonexistence of unrelated business income tax and the organization's status as a tax-exempt organization under section 501(c)(3) of the internal revenue code. For the years presented, the organization has not recognized any tax benefits or loss contingencies for uncertain tax positions based on this evaluation. All tax periods prior to 2011 are no longer subject to examination by tax authorities.”

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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/Desc0RESEARCHTHE FSH SOCIETY IS A WORLD LEADER IN COMBATING FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY ALSO KNOWN AS FSH MUSCULAR DYSTROPHY AND FSHD. THE FSH SOCIETY'S PURPOSE IS TO CONDUCT RESEARCH, INCREASE AWARENESS, UNDERSTANDING AND EDUCATION ON FSHD. FSHD IS THE MOST COMMON ADULT MUSCULAR DYSTROPHY WITH A PREVALENCE OF 1:8,333 (IT IS THE THIRD MOST COMMON MUSCLE DISEASE BY INCIDENCE). FSHD IS RECOGNIZABLE INITIALLY BY MUSCLE WASTING AND WEAKNESS IN PARTICULAR MUSCLE GROUPS E.G. (FACE - FACIO, SHOULDERS - SCAPULA, AND UPPER ARMS - HUMERUS), AND SUBSEQUENTLY MAY CAUSE ATROPHY AND WASTING IN MULTIPLE MUSCLE GROUPS SUCH AS LOWER BODY, LEGS AND TORSO AND ALL SKELETAL MUSCLES LATER IN THE DISEASE. THE DISEASE HAS A HIGH BURDEN OF DISEASE AND BRINGS WITH IT SIGNIFICANT DISABILITY AND EVEN PREMATURE DEATH IN AFFECTED INDIVIDUALS. FOR APPROXIMATELY 860,000 MEN, WOMEN, AND CHILDREN WORLDWIDE THE MAJOR CONSEQUENCE OF INHERITING THIS GENETIC FORM OF MUSCULAR DYSTROPHY MAY BE A LIFELONG PROGRESSIVE LOSS OF ALL SKELETAL MUSCLES. FSHD CAN BE A CRIPPLING AND LIFE SHORTENING DISEASE. FSHD IS AN AUTOSOMAL DOMINANT MUSCULAR DYSTROPHY. IT IS BOTH GENETICALLY AND SPONTANEOUSLY TRANSMITTED TO CHILDREN. IT CAN AFFECT MULTIPLE GENERATIONS AND ENTIRE FAMILIES. WITH FSHD THERE IS A LOSS OF MUSCLE STRENGTH THAT RANGES BETWEEN ONE AND FOUR PERCENT A YEAR DURING A LIFETIME. IN TERMS OF FUNCTIONAL IMPAIRMENT, 20 PERCENT OF FSHD-AFFECTED INDIVIDUALS WILL REQUIRE THE USE OF A WHEELCHAIR. FSHD ALSO HAS VERY SPECIFIC NON-MUSCULAR MANIFESTATIONS; HEARING-LOSS, VISION ISSUES, RETINAL VASCULOPATHY, RESPIRATORY INSUFFICIENCY/ISSUES AND SLEEP DISORDERED BREATHING, SUPRAVENTRICULAR ARRHYTHMIAS (RARE), AND CARDIAC RIGHT BRANCH BUNDLE BLOCK. 95% OF INDIVIDUALS WITH FSHD HAVE THE FSHD1 (FSHD1A) GENETIC VARIATION - CAUSED BY THE CONTRACTION OF DNA MACROSATELLITE REPEAT UNITS, TERMED D4Z4 REPEATS, ON CHROMOSOME 4, LEADING TO THE RELEASE OF TRANSCRIPTIONAL REPRESSION OF A RETROGENE (DUX4) BELIEVED TO BE ASSOCIATED WITH THE CAUSE OF DISEASE. OF THE 5% OF FSHD INDIVIDUALS REMAINING, 80% OF THOSE ARE THE FSHD2 (FSHD1B) GENETIC VARIATION - CAUSED BY MUTATIONS IN THE SMCHD1 GENE ON CHROMOSOME 18 THAT HELPS TO MAINTAIN THE STRUCTURE OF THE D4Z4 REPEATS ON THE LONG ARM OF CHROMOSOME 4. FSHD GENERALLY PRESENTS OUTWARD SIGNS IN 95% OF AFFECTED INDIVIDUALS BY THE SECOND DECADE OF LIFE FOR MEN AND THE THIRD DECADE OF LIFE FOR WOMEN. THE SEVERITY OF FSHD IS VARIABLE AND CAN RANGE FROM NON-MANIFESTING/ASYMPTOMATIC, TO MILD IN PRESENTATION IN SOME INDIVIDUALS, TO SEVERELY CRIPPLING AND LIFE SHORTENING IN INDIVIDUALS WITH THE GENETIC DIAGNOSIS OF FSHD. AS OF MARCH 2015, THE FSH SOCIETY HAS PROVIDED APPROXIMATELY 5.4 MILLION DOLLARS, SINCE THE INCEPTION OF ITS RESEARCH FELLOWSHIPS AND GRANTS PROGRAM IN SEED FUNDS AND GRANTS TO PIONEERING FSHD RESEARCH AREAS AND EDUCATION WORLDWIDE AND CREATED AN INTERNATIONAL COLLABORATIVE NETWORK OF PATIENTS AND RESEARCHERS. THE FSH SOCIETY OFFERS BASIC RESEARCH GRANTS, CLINICAL RESEARCH, RESEARCH, PRE-DOCTORAL, AND POST-DOCTORAL FELLOWSHIPS TO SUPPORT RESEARCH RELEVANT TO UNDERSTANDING THE MOLECULAR GENETICS AND CAUSES OF FSHD ON AN ONGOING AND AD-HOC BASIS. THE FSH SOCIETY SCIENTIFIC ADVISORY BOARD (SAB) DILIGENTLY CARRIES OUT ITS MISSION OF PROVIDING STRATEGY FOR FSHD RESEARCH, THERAPEUTICS AND CLINICAL TRIALS READINESS, RECRUITING AND ATTRACTING QUALIFIED RESEARCHERS AND CLINICIAN-RESEARCHERS, SELECTING RESEARCH PROPOSALS, EVALUATING RESEARCH PROPOSALS, GRANTING FELLOWSHIPS AND MONITORING ONGOING PROJECTS AND RESEARCH OPPORTUNITIES. SINCE 1997, THE FSH SOCIETY HAS FUNDED FELLOWSHIPS TO NEARLY ONE HUNDRED JUNIOR AND SENIOR LEVEL RESEARCHERS, LEADING TO HUNDREDS OF PUBLICATIONS ACKNOWLEDGING SOCIETY SUPPORT IN TOP-TIER SCIENTIFIC JOURNALS. RECENT ADVANCES IN UNDERSTANDING THE MOLECULAR GENETICS AND CELLULAR BIOLOGY OF FSHD HAVE LED TO THE IDENTIFICATION OF POTENTIAL THERAPEUTIC TARGETS. IMPRESSIVE SCIENTIFIC PROGRESS WAS AGAIN ACHIEVED IN 2014 IN OUR UND
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IRS990/ProgSrvcAccomActy2Grp/Desc0MEETINGS, SYMPOSIUMS AND WORKSHOPSTHE FSH SOCIETY ORGANIZES MEETINGS, SYMPOSIUMS AND WORKSHOPS. THE SOCIETY'S ANNUAL FSHD INTERNATIONAL RESEARCH CONSORTIUM SYMPOSIUM FOR RESEARCHERS WORLDWIDE YIELDS IMMEASURABLE GAINS IN OUR UNDERSTANDING OF FSHD. THE 2014, FSH SOCIETY FSHD INTERNATIONAL RESEARCH CONSORTIUM WAS HELD IN SAN DIEGO, CALIFORNIA AS AN ANCILLARY MEETING TO THE AMERICAN SOCIETY OF HUMAN GENETICS AND WAS ATTENDED BY 85 SCIENTISTS, CLINICIANS, RESEARCHERS WORKING ON FSHD AND FSHD PATIENTS. THIS MEETING IS A KEY MEETING FOR THE INTERNATIONAL AND WORLDWIDE RESEARCH COMMUNITY FOR FOCUSING ON ISSUES, COLLABORATING, NETWORKING, AND FOR FILLING IN MISSING GAPS IN THE RESEARCH. CONTINUED AND SIGNIFICANT PROGRESS WAS MADE AT THE 2014 RESEARCH CONSORTIUM AND RESEARCH PLANNING MEETING - PRIORITIES WERE SET AND PLANNING DOCUMENTS AGAIN DISSEMINATED. IN ACCORDANCE WITH ITS PRIMARY PURPOSE OF SERVING THE FSHD COMMUNITY IN THE UNITED STATES AND ABROAD, THE FSH SOCIETY HAS BROUGHT TOGETHER THROUGH EDUCATION, PATIENT NETWORK MEETINGS, SUPPORT GROUP MEETINGS, PEER-SUPPORT, AND ADVOCACY TO MORE THAN 7,500 FSHD-AFFECTED FAMILIES COMMITTED TO WORKING COOPERATIVELY. IN AUGUST 2014, THE BIENNIAL FSH SOCIETY INTERNATIONAL PATIENT RESEARCHER NETWORK DAY WAS HELD IN BOSTON, MASSACHUSETTS. MORE THAN 200 FSHD PATIENTS, FAMILIES, FRIENDS, SCIENTISTS AND RESEARCHERS GATHERED AT THE NEWLY RENAMED "FSHD CONNECT" MEETING TO LISTEN TO THE LATEST FINDINGS IN MOLECULAR GENETICS RESEARCH AND TESTING AND THE LATEST DEVELOPMENTS IN CLINICAL MANAGEMENT AND THERAPEUTICS OF FSHD. THE MAIN FOCUS IS FOR MEDICAL PROFESSIONALS AND PATIENTS TO BE ABLE TO SHARE IDEAS ON THE DISEASE IN A COLLEGIAL SETTING. THE FSHD CONNECT MEETING WAS IMPROVED WITH SIGNIFICANT INVESTMENT OVER THE PREVIOUS 2012 MEETING AND THE FACULTY AND TALKS WERE GREATLY EXPANDED. SEVERAL NOTEWORTHY POINTS WERE A VIDEO KEYNOTE BY U.S. SENATOR ELIZABETH WARREN, A PROFESSIONAL FILM DOCUMENTARY CREW DOING A DOCUMENTARY, A PROFESSIONAL PHOTOGRAPHER PHOTOGRAPHING STUDIO QUALITY PHOTOS OF FSHD, LIVE VIDEO-BROADCAST OF THE MEETING TO THE PATIENTS WHO COULD NOT ATTEND, AND THE OPPORTUNITY TO BE EVALUATED AND GIVE BIO-SAMPLES TO RESEARCH STUDIES ONSITE AT THE MEETING. THE MEETING AND FSHD RECEIVED STRONG MEDIA-EXPOSURE. THE FSH SOCIETY ALSO WORKS WITH THE COMMUNITY TO FOSTER RESEARCH PLANNING MEETINGS, RESEARCH EDUCATION MEETINGS AND PATIENT SUPPORT GROUPS. IN 2014, THE FSH SOCIETY CONTINUED EFFORTS TO ORGANIZE THROUGH ITS "FSHD CHAMPIONS" WORK TO BRING TOGETHER FSHD-FUNDING AGENCIES WORLDWIDE TO BETTER WORK TOGETHER TO SOLVE FSHD AND TO INCREASE RIGOR, OBJECTIVITY AND TRANSPARENCY IN PRECLINICAL RESEARCH TO INCREASE THE LIKELY OF SUCCESS WITH CLINICAL TRIALS ON FSHD. A NOTED ADVANCEMENT OVER THE PRIOR YEAR'S MEETING WAS CHAMPIONS AGREEING THAT THE ANNUAL RESEARCH WORKSHOP SHOULD BE CONSIDERED THE FOCAL POINT FOR ORGANIZING THE RESEARCH MEETING. MEETINGS, SYMPOSIA, WORKSHOPS AND NETWORKING ACTIVITIES ARE ONE OF THE MOST SUCCESSFUL PROGRAMMATIC COMPONENTS OF THE FSH SOCIETY.
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IRS990/ProgSrvcAccomActy3Grp/Desc0EDUCATION, ADVOCACY AND COMMUNITY ACTIONTHROUGH THE FSH SOCIETY STAFF AND ITS WEB SITE PORTAL AT WWW.FSHSOCIETY.ORG, FACEBOOK PAGE, TWITTER ACCOUNT, YAHOO! GROUPS BULLETIN BOARD, E-MAIL LISTSERV (VERTICAL RESPONSE), AND TRIANNUALLY NEWSLETTER THE "FSH WATCH," FSHD PATIENTS HAVE FOUND WAYS TO BE USEFUL TO ONE ANOTHER AND TO BASIC AND CLINICAL RESEARCHERS WORKING ON THEIR DISEASE. THE SUPPORT PATIENTS RECEIVE FROM ONE ANOTHER THROUGH SHARING THEIR COMMON EXPERIENCE IS INVALUABLE AND IMMEASURABLE. THE FSH SOCIETY ACTS AS A CLEARINGHOUSE FOR INFORMATION ON THE FSHD DISORDER AND ON POTENTIAL DRUGS AND DEVICES DESIGNED TO ALLEVIATE THE EFFECTS OF THE DISEASE. IT FOSTERS COMMUNICATION AMONG FSHD PATIENTS, THEIR FAMILIES AND CAREGIVERS, CHARITABLE ORGANIZATIONS, GOVERNMENT AGENCIES, INDUSTRY, SCIENTIFIC RESEARCHERS, AND ACADEMIC INSTITUTIONS. THE FSH SOCIETY ALSO PROVIDES DEDICATED SUPPORT, EDUCATION AND OUTREACH SERVICES TO PATIENTS, PROFESSIONALS, RESEARCHERS AND FAMILIES IN NEED OF ASSISTANCE. THE SOCIETY RESPONDS TO NUMEROUS INQUIRIES BY PHONE, WEB AND E-MAIL FROM NEWLY DIAGNOSED PATIENTS, PATIENTS, FAMILY MEMBERS AND SPOUSES OF FSHD PATIENTS AND PROFESSIONALS EACH WEEK. IN 2014, THE SOCIETY ADDED ADDITIONAL RESOURCES TO HELP GROW IN-PERSON SUPPORT GROUP AND EDUCATIONAL DAYS ASSOCIATED WITH MAJOR CLINICAL AND RESEARCH CENTERS AROUND THE UNITED STATES AND MANY OF THESE MEETINGS WERE BROADCAST VIA INTERNET VIDEO-STREAMING FOR THOSE HAVING DIFFICULTY GETTING TO MEETINGS IN PERSON. THE SOCIETY CONTINUED TO DEVELOP MATERIALS AND ASSETS DEPICTING WHAT FSHD IS AND WHAT IT IS TO LIVE WITH THE DISEASE IN WRITING, PHOTOGRAPHS AND VIDEOS. THE SOCIETY CONTINUED TO RAISE VISIBILITY FOR FSHD THROUGH PUBLIC SERVICE ANNOUNCEMENTS ON THE DISEASE AND INCREASED EXPOSURE TO PSAS WERE BROADCAST ON 18 STATIONS FOR A TOTAL OF 1,821 BROADCASTS WITH OVER 555,000 AUDIENCE IMPRESSIONS.THROUGH THE FSH SOCIETY STAFF AND ITS WEB SITE PORTAL AT WWW.FSHSOCIETY.ORG, ELECTRONIC YAHOO! BULLETIN BOARD (31,055 MESSAGES, 1,052 MEMBERS), FACEBOOK PAGES (2,009 FACEBOOK FOLLOWERS), TWITTER, E-MAIL LISTSERV (VERTICAL RESPONSE), AND NEWSLETTER THE "FSH WATCH," FSHD PATIENTS HAVE FOUND WAYS TO BE USEFUL TO BASIC AND CLINICAL RESEARCHERS WORKING ON THEIR DISEASE. IN 2015, THE FSH SOCIETY ADDED TWO FULL-TIME STAFF MEMBERS, AN INCREASE FROM THREE, TO HELP WITH RESPONSES TO INQUIRIES AND REQUESTS THAT WE RECEIVE. THE SUPPORT PATIENTS RECEIVE FROM ONE ANOTHER THROUGH SHARING THEIR COMMON EXPERIENCE IS INVALUABLE AND IMMEASURABLE. IN 2014, THE SOCIETY COMPLETED ITS NEW WEB SITE WITH NEW ARCHITECTURE; MIGRATION AND UPDATING OF CONTENT; CREATION OF NEW FORMS; TESTING OF E-COMMERCE. THE NEW SITE WAS LAUNCHED ON JANUARY 10, 2015. THE SOCIETY CONTINUES TO RECEIVE P.R. AND SOCIAL MEDIA MARKETING/SERVICES AND EXPERTISE DONATED BY THE FIRM SHIFT. IN 2014, THE SOCIETY WORKED WITH PHARMACEUTICAL COMPANIES COMMENCING CLINICAL TRIALS IN EUROPE AND POTENTIALLY THE U.S. IN 2015, AND MET WITH VENTURE CAPITAL COMPANIES TO PROVIDE BACKGROUND AND EDUCATE ON THE DISEASE. IN 2014, AND CONTINUING IN 2015, THE FSH SOCIETY HELPS EDUCATE AND RECRUIT PATIENTS INTO RESEARCH STUDIES HEADQUARTERED AT THE U.S. NATIONAL INSTITUTES OF HEALTH UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL SENATOR PAUL D. WELLSTONE MUSCULAR DYSTROPHY COOPERATIVE RESEARCH CENTER FOR FSHD, IN WORCESTER, MASSACHUSETTS. THE FSH SOCIETY HAS HELPED FACILITATE THE PRODUCTION OF THE WORLD'S LARGEST RESOURCE FOR FSHD BIOMATERIALS THAT ARE BEING MADE AVAILABLE TO ALL RESEARCHERS WORLDWIDE. THE SOCIETY HOPES THAT THIS STRATEGY WILL HELP WITH BETTER REPRODUCTION, VALIDATION AND CORROBORATION OF RESEARCH RESULTS BY PROVIDING THE COMMUNITY WITH A HIGH QUALITY AND HIGH NUMBER OF WELL CONTROLLED FSHD CELL LINES THAT MULTIPLE RESEARCH GROUPS CAN INDEPENDENTLY ACCESS. THE FSH WATCH IS PUBLISHED THREE TIMES PER YEAR, INCLUDING A MORE TECHNICAL AND SCIENTIFIC ANNUAL RESEARCH EDITION, AND IS DISTRIBUTED IN HARDCOPY BY U.S. POSTAL MAIL, ELECTRONICALLY BY
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IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt0661585
IRS990/PYInvestmentIncomeAmt027518
IRS990/PYOtherExpensesAmt0267358
IRS990/PYOtherRevenueAmt0-41429
IRS990/PYProgramServiceRevenueAmt00
IRS990/PYRevenuesLessExpensesAmt0363002
IRS990/PYSalariesCompEmpBnftPaidAmt0380802
IRS990/PYTotalExpensesAmt01309745
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt01672747
IRS990/QuidProQuoContributionsInd01
IRS990/QuidProQuoContriDisclInd01
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt0382818
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990/SavingsAndTempCashInvstGrp/BOYAmt01282469
IRS990/SavingsAndTempCashInvstGrp/EOYAmt01311111
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt01879797
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt01686658
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt01401134
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt01096414
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt01093556
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IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt046663
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt029090
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt014457
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt010643
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt010554
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt0111407
IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt094875
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.88190
IRS990ScheduleA/PublicSupportPY170Pct00.88190
IRS990ScheduleA/PublicSupportTotal170Amt06410410
IRS990ScheduleA/SubstantialContributorsTotAmt0747149
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IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt01686658
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt01401134
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt01096414
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Filings

Displayed year

2014 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$3,066,846
Liabilities
$322,961
Net assets
$2,743,885
Revenue
$1,946,461
Expenses
$1,563,643
Net income
$382,818
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