FSHD SOCIETY
75 NORTH MAIN STREET NO 1073, RANDOLPH, MA 02368 www.fshdsociety.org

Total Revenue
$2,627,205
Total Expenses
$2,864,804
Net Assets
$5,533,672

Organizations Filed Purposes: INCREASE AWARENESS OF & CONDUCT RESEARCH ON FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY.

RESEARCH THE SOCIETY SEEKS TO ACCELERATE RESEARCH TO EXPEDITE TREATMENTS AND A CURE FOR FSHD MUSCULAR DYSTROPHY. ORGANIZING AND FUNDING RESEARCH INTO THE CAUSES OF FSHD, AND, ULTIMATELY DEVELOPING TREATMENTS AND A CURE, IS THE SOCIETY'S CORE MISSION.

PATIENT ADVOCACY AND EDUCATIONTHE SOCIETY SEEKS TO ENLARGE, ENGAGE, & EMPOWER AN ACTIVE GLOBAL COMMUNITY. THE FSHD SOCIETY'S PATIENT ADVOCACY AND EDUCATION PROGRAMS DIRECTLY BENEFIT PATIENTS AND THEIR FAMILIES BY CONNECTING FSHD MUSCULAR DYSTROPHY PATIENTS AND FAMILIES TO HEALTHCARE PROVIDERS, RESEARCH INSTITUTIONS, AND SUPPORT GROUPS, PROVIDING HIGH-QUALITY EDUCATIONAL MATERIALS, ORGANIZING EDUCATIONAL MEETINGS AND CONFERENCES, AND CREATING OPPORTUNITIES AND SUPPORT FOR ADVOCACY AND RAISING PUBLIC AWARENESS.

Executives Listed on Filing

Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing

NameTitleHours Per WeekTotal Salary
Mark StoneCEO & PRESIDENT40$206,719
Jamshid ArjomandCHIEF SCIENCE OFFICER40$188,883
Beth JohnstonCHIEF COMMUNITY ENGAGEMENT40$117,550
Lisa SchimmelCFO30$111,991
June KinoshitaDIRECTOR OF RESEARCH AND PATIENT ENGAGEMENT40$101,000
Bruce RyskampBOARD MEMBER1$0
Jack GerblickBOARD MEMBER1$0
Marie MorrellBOARD MEMBER1$0
Carden WyckoffBOARD MEMBER1$0
Neil Andrew Solomon Md FacpBOARD MEMBER1$0
Thomas F RuekertFORMER BOARD MEMBER1$0
George Pollock JrBOARD MEMBER10$0
Linda LaurelloBOARD MEMBER1$0
Lee Frank Kolakowski PhdBOARD MEMBER10$0
Michelle Helen MackayBOARD MEMBER1$0
William R Lewis Iii MdBOARD MEMBER1$0
David RubinBOARD MEMBER1$0
Stuart LaiBOARD MEMBER1$0
David J Glass MdFORMER BOARD MEMBER1$0
Amy Z BekierBOARD MEMBER10$0
Ellen K HannanTREASURER10$0
Christine FordSECRETARY10$0
Howard L Chabner JdVICE CHAIRMAN10$0
James A Chin SrCHAIRMAN10$0

Data for this page was sourced from XML published by IRS (public 990 form dataset) from: https://s3.amazonaws.com/irs-form-990/202120919349301122_public.xml