2024-11-15T13:52:15-06:00 2023-12-31 161131146 BONADIO & CO LLP 432 NORTH FRANKLIN STREET SYRACUSE NY 13204 990 2023-01-01 341915691 GORLIN SYNDROME ALLIANCE GORL 2676896443 3005 S LAMAR BLVD D 109 264 AUSTIN TX 78704 MEREDITH WEISS EXECUTIVE DIRECTOR 2676896443 2024-11-13 1 1 TIMOTHY HAMMOND P01224809 3154227109 2024-11-13 2023 2024-10-15 13:58:12Z X MEREDITH WEISS 3005 S LAMAR BLVD D 109 264 AUSTIN TX 78704 317527 0 X HTTPS://GORLINSYNDROME.ORG/ X 2000 PA TO THOUGHTFULLY SUPPORT, COMPREHENSIVELY EDUCATE, AND AGGRESSIVELY SEEK THE BEST TREATMENTS AND A CURE FOR THOSE AFFECTED BY GORLIN SYNDROME. 10 10 3 12 0 0 501827 293741 1561 12056 0 3252 0 -1979 503388 307070 0 0 0 0 141944 239275 0 0 28257 160382 119806 302326 359081 201062 -52011 391014 337186 3432 1615 387582 335571 TO THOUGHTFULLY SUPPORT, COMPREHENSIVELY EDUCATE, AND AGGRESSIVELY SEEK THE BEST TREATMENTS AND A CURE FOR THOSE AFFECTED BY GORLIN SYNDROME. 0 0 296996 12056 PROGRAM SERVICES INCLUDE PROVIDING INFORMATION, SUPPORT, AND PARTICIPATION IN RESEARCH. INFORMATION: EXPANDED THE WEBSITE LIBRARY OF ARTICLES, CONDUCTED EDUCATIONAL WEBINARS, EXPERT PRESENTATIONS AT OUR 2023 NATIONAL IN-PERSON CONFERENCE, AND QUARTERLY TOWN HALL MEETINGS. SUPPORT: CONTINUED / EXPANDED VIRTUAL COMMUNITY GROUP MEETINGS, AND PROFESSIONALLY LED SUPPORT GROUPS AT THE 2023 NATIONAL IN-PERSON CONFERENCE. RESEARCH: ACCELERATED RESEARCH BY CONTINUING TO ENROLL PEOPLE IN PATIENT REGISTRY, SUPPORTED CLINICAL TRIAL RECRUITMENT AND FUNDED A GRANT FOR GORLIN SYNDROME RELATED RESEARCH. 296996 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 5 0 1 3 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 10 10 1 0 0 0 0 0 0 1 1 0 0 0 1 1 1 1 1 1 0 0 PA X MEREDITH WEISS 2676896443 3005 S LAMAR BLVD D 109 264 AUSTIN TX 78704 MEREDITH WEISS PRESIDENT 4.00 X X 0 0 0 STACY BISSELL VICE PRESIDENT 2.00 X X 0 0 0 TAYLOR HODGE VICE PRESIDENT 2.00 X X 0 0 0 BETH SPIEGEL TREASURER 1.00 X X 0 0 0 RONI RUBENSTEIN SECRETARY 2.00 X X 0 0 0 DR JIM SWIFT DIRECTOR 0.50 X 0 0 0 JENNI WERKMEISTER DIRECTOR 1.00 X 0 0 0 KEVIN GULLATT DIRECTOR 1.00 X 0 0 0 MICHAEL RAINEN DIRECTOR 0.50 X 0 0 0 SAMUEL BRENEISER DIRECTOR 0.50 X 0 0 0 DR ELENA HAWRYLUK DIRECTOR 2.00 X 0 0 0 JULIA BRENEISER EXECUTIVE DIRECTOR 32.00 X 74996 0 14347 74996 0 14347 0 0 0 0 0 350 23081 270310 293741 PATIENT CONFERENCES 611430 12056 12056 12056 3252 3252 8478 23081 10457 -1979 -1979 307070 12056 0 1273 89342 71786 7843 9713 140021 113157 11338 15526 633 493 78 62 9279 7230 1145 904 1859 108 1683 68 3716 2532 307 877 13302 8522 3673 1107 3851 1540 2311 67582 67582 592 592 2557 2557 RESEARCH EXPENSES 20000 20000 MISCELLANEOUS EXPENSES 6347 4046 2301 359081 296996 33828 28257 257567 13701 322630 132000 0 14613 13758 1447 855 391014 337186 3432 1615 3432 1615 X 43582 28908 344000 306663 387582 335571 391014 337186 -52011 0 X 1 X 0 0 0 X 262683 390417 361122 501827 293741 1809790 262683 390417 361122 501827 293741 1809790 1007526 802264 1809790 13617 0.44330 0.40460 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2963 2108 855 11650 11650 0 855 GOLF FOR GSA 31559 23081 8478 8478 1979 31559 23081 8478 8478 1979 10457 -1979 FORM 990, PART VI, SECTION A, LINE 2 JULIE BRENEISER, EXECUTIVE DIRECTOR IS THE SPOUSE OF SAMUEL BRENEISER, BOARD DIRECTOR. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS REVIEWED BY MANAGEMENT AND IS THEN MADE AVAILABLE TO THE BOARD OF DIRECTORS UPON REQUEST PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C MEMBERS OF THE BOARD OF DIRECTORS ARE REQUIRED TO DISCLOSE POTENTIAL CONFLICTS OF INTEREST AS DEFINED IN THE ORGANIZATION'S CONFLICT OF INTEREST POLICY. AMONG OTHER THINGS, THE POLICY MAKES CLEAR THAT ALL DECISIONS OF THE BOARD OF DIRECTORS, OFFICERS, AND EMPLOYEES OF THE ORGANIZATION ARE MADE SOLELY ON THE BASIS OF A DESIRE TO PROMOTE THE BEST INTEREST OF THE ORGANIZATION AND THE PUBLIC GOOD. THE CONFLICT OF INTEREST POLICY REQURES MEMBERS OF THE BOARD OF DIRECTORS TO IDENTIFY TO THE BEST OF THEIR KNOWLEDGE AFFILIATIONS WITH ORGANIZATIONS THAT MAY POTENTIALLY REALTED TO THE FINANCIAL OR OTHER SUBSTANTIVE OPERATIONS OF THE ORGANIZATION. THEY ARE ALSO ASKED TO IDENTIFY CIRCUMSTANCES INVOLVING EITHER THEMSELVES, OR A MEMBER OF THEIR EXTENDED FAMILY, THAT MAY BE CONSTUED AS A CONFLICT OF INTEREST. THE ORGANIZATION'S PERSONNEL ALSO ENSURE THAT THERE ARE NO CONFLICTS OF INTREST WHEN CONSIDERING THE ENGAGEMENT OF A NEW VENDOR. IF A POTENTIAL CONFLICT IS IDENTIFIED, APPROPRIATE STEPS ARE TAKEN TO BOTH ASSESS THE NATURE OF THE POTENTIAL CONFLICT AND, SUBSEQUENTLY, TO ENSURE THAT THE POSSIBILITY OF AN ACTUAL CONFLICT IS MITIGATED. SUCH MITIGATION IS MANAGED AND THE LETTER AND SPIRIT OF THE CONFLICTS POLICY ARE UPHELD. FORM 990, PART VI, SECTION B, LINE 15A THE EXECUTIVE COMMITTEE OF THE BOARD OF DIRECTORS REVIEWS THE EXECUTIVE DIRECTOR'S COMPENSATION, CONSIDERING FACTORS SUCH AS PERFORMANCE, SALARY COMPARISONS IN THE GEOGRAPHIC AREA, AND OTHER RELEVANT CONSIDERATIONS. BASED ON THEIR EVALUATION, THE EXECUTIVE COMMITTEE RECOMMENDS THE PROPOSED COMPENSATION TO THE BOARD OF DIRECTORS FOR FINAL APPROVAL, WHICH IS DOCUMENTED IN THE MINUTES. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, FORM 1023, AND FORM 990 ARE MADE AVAILABLE TO THE PUBLIC UPON REQUEST.