2025-11-05T14:11:12-06:00 2024-12-31 161131146 BONADIO & CO LLP 432 NORTH FRANKLIN STREET SYRACUSE NY 13204 990 2024-01-01 341915691 GORLIN SYNDROME ALLIANCE GORL 2676896443 3005 S LAMAR BLVD D 109 264 AUSTIN TX 78704 MEREDITH WEISS EXECUTIVE DIRECTOR 2676896443 2025-10-29 1 1 BENJAMIN NOVAK P01946532 3154227109 2025-10-21 2024 2025-03-06 01:10:19Z MEREDITH WEISS 3005 S LAMAR BLVD D 109 264 AUSTIN TX 78704 500890 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 29 0 0 293741 480996 12056 0 3252 10499 -1979 -1971 307070 489524 0 0 0 0 239275 322924 0 0 80567 119806 107500 359081 430424 -52011 59100 337186 670207 1615 275536 335571 394671 X TO THOUGHTFULLY SUPPORT, COMPREHENSIVELY EDUCATE, AND AGGRESSIVELY SEEK THE BEST TREATMENTS AND A CURE FOR THOSE AFFECTED BY GORLIN SYNDROME. 0 0 279283 THE GORLIN SYNDROME ALLIANCE (GSA) ADVANCES ITS MISSION THROUGH TARGETED PROGRAM SERVICES DESIGNED TO SUPPORT PATIENTS AND THEIR FAMILIES, WHILE COALESCING THE BROADER COMMUNITY, INCLUDING PATIENTS, SCIENTISTS AND CLINICIANS, AROUND PRIORITIES THAT IMPROVE HOW PATIENTS LIVE WITH THE DISEASE NOW, AND IN THE FUTURE.RESEARCH GRANT PROGRAMIN 2024, THE GSA ORGANIZED, MANAGED, AND FUNDED THE ONLY RESEARCH GRANT PROGRAM FOR GORLIN SYNDROME, DEDICATED TO IMPROVING QUALITY OF LIFE FOR PATIENTS AND FAMILIES AFFECTED. THROUGH TARGETED INVESTMENT IN SCIENTIFIC LEARNINGS AND INNOVATION, THIS PROGRAM ACCELERATES DISCOVERIES IN THE FIELD. OUR OBJECTIVE IS TO FOCUS RESEARCHERS' EFFORTS ON THE QUESTIONS THAT WILL ILLUMINATE ROOT MECHANISMS OF DISEASE, AND IMPROVE CLINICAL OUTCOMES ON MEASURES THAT MATTER TO PATIENTS. IN 2024, THE GSA RECEIVED MORE THAN DOUBLE THE NUMBER OF RESEARCH PROPOSAL APPLICATIONS FROM THE YEAR PRIOR. THE GRANT REVIEW COMMITTEE SELECTED THE PROPOSAL "DEFINING THE BCC MICROENVIRONMENT CHANGE IN RESPONSE TO SMOOTHENED INHIBITION: IDENTIFICATION OF A ROLE FOR ADDITION OF CHECKPOINT INHIBITOR TO OPTIMIZE ANTITUMOR THERAPY FOR OVERWHELMING DISEASE".PATIENT REGISTRY DATA COLLECTIONTHE GSA MAINTAINED A GORLIN SYNDROME PATIENT REGISTRY, WHICH ENROLLS PATIENTS AND COLLECTS ANONYMIZED HEALTH HISTORIES FROM PARTICIPANTS FOR THE PURPOSE OF CENTRALIZING DATA ABOUT GORLIN SYNDROME. THE DATA WILL DRIVE DISCOVERIES. THE GSA ENROLLED NEW PARTICIPANTS DURING 2024, WITH THE OBJECTIVE OF GROWING THE REGISTRY PARTICIPATION YEAR ON YEAR.EDUCATIONAL RESOURCESTHE GSA PROVIDED FREE, PUBLICLY AVAILABLE EDUCATIONAL RESOURCES, INCLUDING PATIENT FOCUSED EDUCATIONAL MATERIALS, WEBINARS, AND EXPERT PRESENTATIONS. THESE MATERIALS ARE MADE AVAILABLE AT NO COST TO INDIVIDUALS ACROSS THE US THROUGH OUR WEBSITE AND YOUTUBE CHANNEL.COMMUNITY AND PATIENT SUPPORT SERVICESTHE GSA FACILITATED 12 VIRTUAL SUPPORT GROUP MEETINGS, 4 TOWN HALL MEETINGS, AND AD HOC IN-PERSON GATHERINGS FOR PATIENTS AND FAMILIES. TELEPHONIC SUPPORT AND ASSISTANCE WAS PROVIDED THROUGHOUT THE YEAR, WITH STAFF AND VOLUNTEERS RESPONDING TO 119 INCOMING TELEPHONE CALLS AND COUNTLESS EMAILS FROM PATIENTS, FAMILIES, OR CLINICIANS. INFORMATION DISSEMINATION AND COMMUNICATIONSTHROUGH ITS COMMUNICATIONS STRATEGY, THE GSA DISTRIBUTED (12) MONTHLY E-NEWSLETTERS, WITH ADDITIONAL, TARGETED RESEARCH UPDATES. INFORMATION INCLUDED EMERGING THERAPIES, CLINICAL TRIAL OPPORTUNITIES, AND PATIENT SUPPORT SERVICES. THROUGH VOLUNTEERS AND STAFF, THE GSA ALSO MADE HUNDREDS OF CALLS TO COMMUNITY MEMBERS TO ENSURE CRITICAL INFORMATION WAS SHARED. IN ADDITION, RESEARCH AND GRANT OPPORTUNITY ANNOUNCEMENTS WERE CIRCULATED TO CLINICIANS AND SCIENTISTS IN THE GSA NETWORK. 279283 1 1 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 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 9 0 1 3 1 0 0 0 0 0 0 0 0 0 0 X 10 10 0 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 STACY BISSELL DIRECTOR 2.00 X 0 0 0 TAYLOR HODGE VICE PRESIDENT 2.50 X X 0 0 0 BETH SPIEGEL TREASURER 1.50 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 ROLLED OFF BOARD IN JUNE 1.00 X 0 0 0 KEVIN GULLATT PRESIDENT STARTING IN MARCH 3.00 X X 0 0 0 MICHAEL RAINEN DIRECTOR 1.50 X 0 0 0 SAMUEL BRENEISER DIRECTOR 0.50 X 0 0 0 DR ELENA HAWRYLUK DIRECTOR 2.00 X 0 0 0 ALIX ALDERMAN DIRECTOR JOINED BOARD IN SEP. 1.00 X 0 0 0 JULIA BRENEISER EXECUTIVE DIRECTOR 32.00 X 84517 0 7612 MEREDITH WEISS EXECUTIVE DIRECTOR 32.00 X 41136 0 0 125653 0 7612 0 0 0 0 0 18000 462996 480996 10499 10499 9395 18000 11366 -1971 -1971 489524 0 0 8528 133265 87921 12868 32476 174855 114107 16588 44160 943 734 118 91 13861 10785 1728 1348 23308 6689 16540 79 3503 452 3018 33 25611 16089 7142 2380 12557 6223 6334 1500 1500 592 592 1857 1857 RESEARCH EXPENSES 34233 34233 MISCELLANEOUS EXPENSES 4339 550 3789 430424 279283 70574 80567 13701 427649 322630 242295 14613 14350 855 263 337186 670207 1615 500 275036 1615 275536 X 28908 183103 306663 211568 335571 394671 337186 670207 59100 0 X 1 X 0 0 0 X 390417 361122 501827 293741 480996 2028103 390417 361122 501827 293741 480996 2028103 979830 1048273 3252 10499 13751 2041854 13617 0.51340 0.44330 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2963 2700 263 11650 11650 0 263 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.