2024-07-22T16:02:53-05:00 2022-12-31 161131146 BONADIO & CO LLP 432 NORTH FRANKLIN STREET SYRACUSE NY 13204 990 2022-01-01 341915691 GORLIN SYNDROME ALLIANCE GORL 2676896443 PO BOX 4 READING PA 19607 JULIA BRENEISER EXECUTIVE DIRECTOR 2676896443 2024-07-22 1 JULIA BRENEISER 999009999 0 TIMOTHY HAMMOND P01224809 3154227109 2024-07-22 0 AAL1 IAL1 2022 2023-04-26 12:10:37Z JULIA BRENEISER PO BOX 4 READING PA 19607 503388 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 13 0 0 361122 501827 0 1561 0 0 0 0 361122 503388 0 0 0 0 158650 141944 0 0 15605 204884 160382 363534 302326 -2412 201062 216745 391014 30225 3432 186520 387582 TO THOUGHTFULLY SUPPORT, COMPREHENSIVELY EDUCATE, AND AGGRESSIVELY SEEK THE BEST TREATMENTS AND A CURE FOR THOSE AFFECTED BY GORLIN SYNDROME. 0 0 234531 1561 PROGRAM SERVICES INCLUDE PROVIDING INFORMATION, SUPPORT, AND PARTICIPATION IN RESEARCH. INFORMATION: EXPANDED THE WEBSITE LIBRARY OF ARTICLES, CONDUCTED EDUCATIONAL WEBINARS AND TOWN HALL MEETINGS, PUBLISHED VOICE OF THE PATIENT REPORT FROM THE EXTERNALLY LED-PATIENT FOCUSED DRUG DEVELOPMENT MEETING WITH THE FDA. SUPPORT: CONTINUED / EXPANDED VIRTUAL COMMUNITY GROUP MEETINGS, SEVEN IN-PERSON REGIONAL GATHERINGS WITH EXECUTIVE DIRECTOR, ANNOUNCED PLANS FOR 2023 NATIONAL IN-PERSON CONFERENCE. RESEARCH: ACCELERATED RESEARCH BY CONTINUING TO ENROLL PEOPLE IN PATIENT REGISTRY, SUPPORTED CLINICAL TRIAL RECRUITMENT, LAUNCHED REQUEST FOR APPLICATIONS FOR PATIENT-LED RESEARCH GRANT PROGRAM. 234531 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 2 0 1 3 1 0 0 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 JULIA BRENEISER 2676896443 PO BOX 4 READING PA 19607 MEREDITH WEISS PRESIDENT 4.00 X X 0 0 0 STACY BISSELL VICE PRESIDENT 4.00 X X 0 0 0 BETH SPIEGEL TREASURER 1.00 X X 0 0 0 RONI RUBENSTEIN SECRETARY 1.00 X X 0 0 0 DR ELENA HAWRYLUK DIRECTOR 1.00 X 0 0 0 DR JIM SWIFT DIRECTOR 1.00 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 1.00 X 0 0 0 SAMUEL BRENEISER DIRECTOR 1.00 X 0 0 0 JULIA BRENEISER EXECUTIVE DIRECTOR 32.00 X 74996 0 19680 74996 0 19680 0 0 0 0 0 323 5015 496489 501827 PATIENT CONFERENCES 611430 1561 1561 1561 503388 1561 0 0 X 94756 72015 18003 4738 38077 31338 5335 1404 9111 6924 1731 456 10265 10265 49560 44000 5560 900 900 5983 600 3739 1644 8298 4000 4298 4936 4936 33303 26840 6463 592 592 2667 2667 PROGRAM EXPENSES 43878 43878 302326 234531 52190 15605 212670 257567 132000 2036 14613 13166 2039 1447 216745 391014 30225 3432 30225 3432 X 176520 43582 10000 344000 186520 387582 216745 391014 201062 0 X 1 X 0 0 0 X 220926 262683 390417 361122 501827 1736975 220926 262683 390417 361122 501827 1736975 1034207 702768 1736975 1561 0.40460 0.46400 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2963 1516 1447 11650 11650 0 1447 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. FORM 990, PART IX, LINE 11G CONTRACTED SERVICES: PROGRAM SERVICE EXPENSES 44,000. MANAGEMENT AND GENERAL EXPENSES 5,560. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 49,560. THE ORGANIZATION IS FILING THE 2022 FORM 990 LATE DUE TO REASONABLE CAUSE. THE ORGANIZATION WAS ERRONEOUSLY DETERMINED TO BE A PRIVATE FOUNDATION IN 2022 FOR THE TAX YEAR ENDED DECEMBER 31, 2021, BUT ACTUALLY QUALIFIED, AND CONTINUED TO QUALIFY, AS A PUBLIC CHARITY SINCE INCEPTION. THE ORGANIZATION FILED A 2021 FORM 990-PF HOWEVER BEGAN THE PROCESS OF REQUESTING RETROACTIVE RECLASSIFICATION OF ITS FOUNDATION STATUS. THE ORGANIZATION BELIEVED THAT FILING A 2022 FORM 990-PF WOULD NEGATIVELY IMPACT ITS JUSTIFICATION TO RETROACTIVELY RECLASSIFY ITS FOUNDATION STATUS, AND THEREFORE ATTEMPTED TO FILE A 2022 FORM 990 PRIOR TO THE EXTENDED DUE DATE, HOWEVER THIS ATTEMPTED FILING WAS REJECTED. THE ORGANIZATION ENGAGED QUALIFIED PROFESSIONAL ASSISTANCE TO COMPLETE THE PROCESS OF REQUESTING RETROACTIVE RECLASSIFICATION OF ITS FOUNDATION STATUS, WHICH WAS FILED ON FEBRUARY 26, 2024. THE ORGANIZATION WAS NOTIFIED BY LETTER DATED MARCH 7, 2024 (WHICH WAS NOT RECEIVED BY THE ORGANIZATION UNTIL APRIL 1, 2024) THAT THE ORGANIZATION'S REQUEST WAS APPROVED AND THE ORGANIZATION WAS RECLASSIFIED AS A PUBLIC CHARITY DESCRIBED IN IRC SECTION 170(B)(1)(A)(VI). THEREFORE, THE ORGANIZATION IS PROMPTLY FILING THE 2022 FORM 990 AFTER ITS FOUNDATION STATUS WAS SUCCESSFULLY RETROACTIVELY RECLASSIFIED.