2017-11-14T13:23:23-06:00 2017-06-30 541498950 RENNER AND COMPANY CPA PC 700 NORTH FAIRFAX ST SUITE 400 ALEXANDRIA VA 22314 990 2016-07-01 112779073 SJOGREN'S SYNDROME FOUNDATION INC SJOG 3015304420 6707 DEMOCRACY BLVD NO 325 BETHESDA MD 20817 STEVEN TAYLOR CHIEF EXECUTIVE OFFICER 3015304420 2017-11-03 1 ANDREW E YOUNG CPA P01203950 7035351200 75.145.91.221 2017-11-03 14:10:06 ED P 6BF308E884B029B3369913C5A39EA7E93DE7C1DA 7BAFA51976F3CFF2D8B3C044EEAAB578A00C5AB6 2016 2017-02-10 21:41:12Z STEVEN TAYLOR 6707 DEMOCRACY BLVD NO 325 BETHESDA MD 20817 2395783 0 X WWW.SJOGRENS.ORG X 1983 NY THE FOUNDATION'S MISSION IS TO EDUCATE PATIENTS AND THEIR FAMILIES ABOUT SJOGREN'S, TO INCREASE PUBLIC AND PROFESSIONAL AWARENESS OF SJOGREN'S AND TO ENCOURAGE RESEARCH INTO NEW TREATMENTS AND A CURE. 18 18 14 425 98688 0 1795342 1848890 389872 450715 22464 24128 28280 -55627 2235958 2268106 155500 145500 0 0 1090246 1190401 0 0 239596 837435 833904 2083181 2169805 152777 98301 625488 679709 390095 325192 235393 354517 X THE FOUNDATION'S MISSION IS TO EDUCATE PATIENTS AND THEIR FAMILIES ABOUT SJOGREN'S, TO INCREASE PUBLIC AND PROFESSIONAL AWARENESS OF SJOGREN'S AND TO ENCOURAGE RESEARCH INTO NEW TREATMENTS AND A CURE. 0 0 341173 145500 6250 RESEARCH GRANTS TO PROMOTE CONTINUED MEDICAL AND SCIENTIFIC RESEARCH IN THE AREA OF SJOGREN'S. FIVE GRANTS WERE AWARDED TO UNIVERSITY AFFILIATED RESEARCHERS DURING 2017. ONE STUDENT FELLOWSHIP WAS ALSO AWARDED FOR AN INTERNSHIP IN A SJOGREN'S RESEARCH LABORATORY. 219925 NEWSLETTER - SSF PRODUCES TWO NEWSLETTERS. "THE MOISTURE SEEKERS" IS A PATIENT FOCUSED NEWSLETTER WITH INFORMATION ABOUT SJOGREN'S AND ITS MANY MANIFESTATIONS. TMS IS PRODUCED MONTHLY. THE "SJOGREN'S QUARTERLY" IS A PROFESSIONAL PUBLICATION PRODUCED 4 TIMES A YEAR AND OFFERED FREE TO ALL HEALTHCARE PROFESSIONALS TO INCREASE AWARENESS AND EDUCATION AROUND SJOGREN'S. 505625 AWARENESS ACTIVITIES HELP TO PROMOTE SJOGREN'S AND EDUCATE POTENTIAL PATIENTS THROUGH MEDIA AND PUBLIC RELATIONS. THESE PROGRAMS INCLUDE SPEAKING AT PROFESSIONAL CONFERENCES AS WELL AS DISTRIBUTING EDUCATIONAL MATERIALS TO THE PUBLIC AND TO HEALTHCARE PROFESSIONALS. 753927 333272 OTHER PROGRAMS WITHIN THE FOUNDATION INCLUDE STRATEGIC GOVERNANCE PROJECTS, CONFERENCES AND MEETINGS RELATED TO TOPICS RELEVANT TO THOSE WITH SJOGREN'S, AS WELL AS VARIOUS INDUSTRY AND MEMBERSHIP PROJECTS AND SERVICES FOR THOSE WITH SJOGREN'S OR ENTITIES PROVIDING SUPPORT TO THOSE INDIVIDUALS. 753927 333272 1820650 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 2 0 1 14 1 1 1 0 0 0 0 0 0 0 0 0 X 18 18 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 CO CT FL IL MD MA MI MN MS NH NY OH OR PA SC TN UT VA WA WV X X SJOGREN'S SYNDROME FOUNDATION 3015304420 6707 DEMOCRACY BLVD SUITE 325 BETHESDA MD 20817 STEPHEN COHEN OD CHAIRMAN 2.00 X X 0 0 0 KEN ECONOMOU IMMEDIATE PAST CHAIRMAN 2.00 X X 0 0 0 JANET E CHURCH CHAIR-ELECT 2.00 X X 0 0 0 TRICIA GOODING SECRETARY 2.00 X X 0 0 0 KATHY L SIVILS PHD TREASURER 2.00 X X 0 0 0 ESEN K AKPEK MD DIRECTOR 2.00 X 0 0 0 NANCY L CARTERON MD FACR DIRECTOR 2.00 X 0 0 0 THOMAS D SUTTON DIRECTOR 2.00 X 0 0 0 MICHELLE WALLACE DIRECTOR 2.00 X 0 0 0 THERESA LAWRENCE FORD MD DIRECTOR 2.00 X 0 0 0 CYNTHIA LOPYNSKI DIRECTOR 2.00 X 0 0 0 JACK FARICELLI DIRECTOR 2.00 X 0 0 0 HERBERT BARAF MD FACP FACR DIRECTOR 2.00 X 0 0 0 CATHY INGELS DIRECTOR 2.00 X 0 0 0 PATRICIA HURLEY MSC DIRECTOR 2.00 X 0 0 0 TIMOTHY NIEWOLD MD FACR DIRECTOR 2.00 X 0 0 0 MONICA MCGILL ED D DIRECTOR 2.00 X 0 0 0 AVA WU DDS DIRECTOR 2.00 X 0 0 0 STEVEN TAYLOR CHIEF EXEUTIVE OFFICER 40.00 X 272099 0 28196 SHERIESE DEFRUSCIO VICE PRESIDENT OF MARKETING 40.00 X 114851 0 22382 KATHERINE HAMMITT VICE PRESIDENT OF MEDICAL 40.00 X 109117 0 22193 496067 0 72771 3 0 1 0 0 332176 1516714 29747 1848890 MEMBERSHIP DUES 541900 227317 227317 CONFERENCE 541900 124710 84210 40500 ADVERTISING 541800 98688 98688 450715 14056 14056 1956 1956 44215 33967 176 10248 -176 10072 10072 0 332176 85578 -85578 -85578 28250 7956 20294 20294 MISCELLANEOUS INCOME 541900 7701 7701 7701 2268106 339522 98688 -18994 145500 145500 317083 237812 31708 47563 672529 586754 21361 64414 13210 11501 433 1276 124669 106063 5467 13139 62910 52567 3291 7052 23896 23896 3221 3221 67964 56792 3554 7618 21432 17908 1121 2403 121841 101810 6373 13658 69353 69353 1643 1643 6490 5424 338 728 9883 8258 517 1108 AWARENESS ACTIVITIES 105121 104959 162 PRINTING, DUPLICATING, 103376 72549 598 30229 POSTAGE AND DELIVERY 93965 73007 2245 18713 FOOD AND BEVERAGE 63733 63212 521 141986 107180 3273 31533 2169805 1820650 109560 239596 29568 32242 151711 115234 39724 68065 3872 4311 13718 24176 187843 178799 13558 9044 366478 419778 6859 6859 625488 679709 33726 33656 182500 151250 155691 138981 18178 1305 390095 325192 X 235393 354517 235393 354517 625488 679709 98301 20823 0 X X 0 1 X 1 0 X 1342705 1273958 1391279 1795342 1848890 7652174 140908 478681 457086 471117 339777 1887569 1483613 1752639 1848365 2266459 2188667 9539743 592526 639399 753981 1166635 1177018 4329559 0 592526 639399 753981 1166635 1177018 4329559 5210184 13931 11395 21569 19865 16012 82772 13931 11395 21569 19865 16012 82772 1557 14456 3328 7701 27042 1497544 1765591 1884390 2289652 2212380 9649557 0.53990 0.56910 0.00860 0.00890 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 126997 117953 9044 60846 60846 0 9044 DEFERRED RENT 1305 1305 X 2293840 20823 20823 2273017 3221 -8132 -4911 2268106 2174716 8132 8132 2166584 3221 3221 2169805 PART X, LINE 2: IN ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES, ACCOUNTING STANDARDS REQUIRE AN ENTITY TO RECOGNIZE THE FINANCIAL STATEMENT IMPACT OF A TAX POSITION WHEN IT IS MORE-LIKELY-THAN-NOT THAT THE POSITION WILL NOT BE SUSTAINED UPON EXAMINATION. MANAGEMENT EVALUATED THE FOUNDATION'S TAX POSITIONS AND CONCLUDED THERE ARE NO UNCERTAIN TAX POSITIONS THAT REQUIRE ADJUSTMENT TO THE FINANCIAL STATEMENTS TO COMPLY WITH THE PROVISIONS OF THIS GUIDANCE. PART XI, LINE 4B - OTHER ADJUSTMENTS: RECLASSIFICATION OF COSTS OF GOODS SOLD -7,956. RECLASSIFICATION OF LOSS ON DISPOSAL -176. PART XII, LINE 2D - OTHER ADJUSTMENTS: RECLASSIFICATION OF COSTS OF GOODS SOLD 7,956. RECLASSIFICATION OF LOSS ON DISPOSAL 176. WALKABOUTS AND SIPS EVENTS 320729 320729 85578 PARTNER PROGRAMS 11447 11447 332176 332176 85578 85578 -85578 1 JOHNS HOPKINS UNIVERSITY ROSS BLDG 659 720 RUTHLAND AVENUE BALTIMORE MD 21205 520595110 SECTION 501(C)(3) 35000 0 FMV N/A RESEARCH GRANT UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL 5323 HARRY HINES BLVD DALLAS TX 75390 726002868 SECTION 501(C)(3) 25000 0 FMV N/A RESEARCH GRANT THE REGENTS OF THE UNIVERSITY OF CALIFORNIA BERKELEY 100 ACADEMIC HALL 1234 BERKELEY CA 94720 946002123 SECTION 501(C)(3) 35000 0 FMV N/A RESEARCH GRANT BASCOM PALMER EYE INSTITUTE 900 NW 17TH STREET MIAMI FL 33136 590624458 N/A 25000 0 FMV N/A RESEARCH GRANT BOSTON UNIVERSITY ONE SILBER WAY BOSTON MA 02215 042103547 SECTION 501(C)(3) 25000 0 FMV N/A RESEARCH GRANT 4 1 PART I, LINE 2: THE SJOGREN'S SYNDROME FOUNDATION ENCOURAGES AND SUPPORTS RESEARCH INTO SJOGREN'S BY OFFERING ANNUAL RESEARCH GRANT AND STUDENT FELLOWSHIPS. BOTH AWARD CATEGORIES ARE OPEN TO APPLICANTS AT U.S. INSTITUTIONS. GRANTS ARE AWARDED BY A PEER REVIEW PANEL OF SJOGREN'S RESEARCH PROFESSIONALS AND GRANTEES ARE REGULARLY REVIEWED THROUGHOUT THE GRANT CYCLE. OUR RESEARCH PROGRAM PROMOTES BASIC SCIENCE AND CLINICAL INVESTIGATIONS INTO THE CAUSE, PREVENTION, DIAGNOSIS, TREATMENT AND ULTIMATELY A CURE FOR THIS PREVALENT AUTOIMMUNE DISEASE. X X X X X 0 0 0 0 0 0 0 0 0 STEVEN TAYLOR CHIEF EXEUTIVE OFFICER 175000 0 97099 0 0 0 5250 0 22946 0 300295 0 0 0 X 1 14306 X SPECIAL EVENTS 999 15441 FAIR VALUE 0 1 0 FORM 990, PART VI, SECTION B, LINE 11B BOARD MEMBERS WILL HAVE A WEEK TO REVIEW 990 AND MAKE COMMENTS BEFORE IT IS FILED. THE 990 WILL BE READ BY THE CHIEF EXECUTIVE OFFICER BEFORE IT IS SIGNED. FORM 990, PART VI, SECTION B, LINE 12C EACH DIRECTOR, OFFICER, COMMITTEE MEMBER OR EMPLOYEE MUST ANNUALLY REVIEW A COPY OF THIS POLICY AND SHALL BE REMINDED OF THE OBLIGATION TO CONFORM TO IT. EACH COVERED PERSON MUST ANNUALLY COMPLETE A CONFLICT OF INTEREST INFORMATION FORM IDENTIFYING ANY RELATIONSHIPS, POSITIONS OR CIRCUMSTANCES IN WHICH THE COVERED PERSON IS INVOLVED THAT HE OR SHE BELIEVES COULD CREATE A CONFLICT OF INTEREST. FORM 990, PART VI, SECTION B, LINE 15A BOARD ANNUALLY REVIEWS COMPARABLE SALARY AND BONUS INFORMATION AND COMPARES CEO SALARY. FORM 990, PART VI, SECTION C, LINE 19 FINANCIALS ARE POSTED ON THE FOUNDATION'S WEBSITE FOR DONORS, PATIENTS AND VISITORS TO REVIEW. GOVERNANCE DOCUMENTS, CONFLICT OF INTEREST, ETC. ARE ALL AVAILABLE BY CONTACTING THE MAIN OFFICE, FREE OF CHARGE. ALSO THE COPIES OF OUR 990S AND FINANCIALS ARE AVAILABLE BY CONTACTING THE MAIN OFFICE. FORM 990, PART XII, LINE 2C THE ORGANIZATION HAS NOT CHANGED THIS PROCESS FROM THE PRIOR YEAR. THE BOARD OF DIRECTORS IS RESPONSIBLE FOR OVERSIGHT OVER THE INDEPENDENT AUDIT AND SELECTION OF THE INDEPENDENT AUDITORS.