2024-05-08T08:20:04-05:00 2023-06-30 812950760 SAX LLP 1040 AVENUE OF THE AMERICAS 16TH FLOOR NEW YORK NY 10018 990 2022-07-01 135650955 HEMOPHILIA ASSOCIATION OF NEW YORK INC HEMO 2126825510 131 WEST 33RD STREET 11D NEW YORK NY 10001 LINDA MUGFORD EXECUTIVE DIRECTOR 2126825510 2024-05-08 1 LINDA MUGFORD 999009999 0 MIKE SCHALL P02024184 2122682804 2024-05-07 0 AAL1 IAL1 2022 2023-04-26 12:10:37Z LINDA MUGFORD 131 WEST 33RD STREET 11D NEW YORK NY 10001 1143397 0 X WWW.HEMOPHILIANY.COM X 1958 NY FUND CURES FOR HEMOPHILIA AND RELATED CONDITIONS. 14 14 6 18 0 0 392340 507967 0 0 -89315 54143 260453 10113 563478 572223 234517 204169 0 0 515276 460297 0 0 49500 266322 348755 1016115 1013221 -452637 -440998 3657906 3242886 156971 131213 3500935 3111673 X TO PROVIDE INFORMATION, ADVOCACY, ASSISTANCE AND SCHOLARSHIPS FOR THOSE WITH BLEEDING DISORDERS, AS WELL AS PROVIDE RESEARCH FUNDING FOR BETTER THERAPIES AND POTENTIAL CURES FOR BLEEDING DISORDERS. 0 0 628978 137433 PATIENT SERVICES: MOST OF THE ASSOCIATION'S ACTIVITY IS DIRECTED TOWARD PROVIDING INFORMATION AND ASSISTANCE TO THE BLEEDING DISORDERS COMMUNITY SOME TO SPECIFIC INDIVIDUALS AND FAMILIES. DURING 2022-2023 60.2% OF STAFF TIME-EFFORT WAS EXPENDED IN THIS SERVICE FUNCTION, INCLUDED WAS PROVIDING FINANCIAL ASSISTANCE, SPECIFIC PROBLEM RESOLUTION, COUNSELING, OUT-REFERRALS, EDUCATION, ADVOCACY, AND INFORMATIONAL AND EDUCATIONAL MATERIALS FOR PATIENTS/CLIENTS. DURING THE FISCAL YEAR 2022-2023 847 PERSONS WITH BLEEDING DISORDERS AND THEIR FAMILIES WERE SERVED, 11% OF CLIENTS RECEIVED EMERGENCY FINANCIAL ASSISTANCE OR OTHER FORMS OF SPECIFIC ASSISTANCE OR AWARDS TOTALING $90,046. SIXTEEN GROUP MEETINGS WERE CONDUCTED THROUGHOUT THE YEAR. HIGHLIGHTS TEEN RETREAT AND FAMILY EDUCATIONAL CONFERENCE. 70549 63851 THE ORGANIZATION SUPPORTS SCIENTIFIC STUDIES AND INVESTIGATIONS AT QUALIFIED INSTITUTIONS TOWARD FINDING ALLEVIATION OF THE MEDICAL PROBLEMS OF HEMOPHILIA AND OTHER BLEEDING DISORDERS AND THEIR COMPLICATIONS. DURING THE FISCAL YEAR 2022-2023 THE ASSOCIATION AWARDED A 2-YEAR, $200,000 RESEARCH GRANT. 29166 2885 PUBLIC HEALTH AND PROFESSIONAL HEALTH EDUCATION: IN FY 2022-2023 THE ASSOCIATION SUPPORTED BLEEDING DISORDERS PROFESSIONALS IN ATTENDING NATIONAL MEETINGS. ALSO PROVIDED INFORMATION TO THE GENERAL PUBLIC. 3631 COMMUNITY SERVICES 3631 732324 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 6 0 1 6 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 14 14 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 NY X LINDA MUGFORD 2126825510 131 WEST 33RD STREET 11D NEW YORK NY 10001 MARIAM VOUTSIS PRESIDENT 2.00 X X 0 0 0 EILEEN MARGOLIES VICE PRESIDENT 2.00 X X 0 0 0 EDWARD G ROGOFF PHD BOARD CHAIRPERSON 2.00 X X 0 0 0 MARK K SVENNINGSON TREASURER 2.00 X X 0 0 0 JEFFREY ZACHARIA VICE PRESIDENT 2.00 X X 0 0 0 JOANA BAQUERO TRUSTEE 2.00 X 0 0 0 THEODORE BUNIN TRUSTEE 2.00 X 0 0 0 BRIAN EGAN TRUSTEE 2.00 X 0 0 0 ROBERT M GREER TRUSTEE 2.00 X 0 0 0 MARK KOVARIK TRUSTEE 2.00 X 0 0 0 JOSEPH MUGFORD TRUSTEE 2.00 X 0 0 0 MAGGI PACK TRUSTEE 2.00 X 0 0 0 AUREO C PINTO JR TRUSTEE 2.00 X 0 0 0 CHRISTOPHER N TOUSSAINT TRUSTEE 2.00 X 0 0 0 LINDA E MUGFORD EXECUTIVE DIRECTOR 40.00 X 158963 0 39930 158963 0 39930 1 0 1 0 0 308349 199618 507967 59726 59726 456106 461689 -5583 -5583 -5583 109485 308349 109485 0 OTHER REVENUE 10113 10113 10113 572223 0 0 64256 147851 147851 56318 56318 202489 128398 60646 13445 177669 112660 53212 11797 16708 10595 5004 1109 32635 20694 9774 2167 30796 19528 9223 2045 1750 1750 49170 49170 9202 9202 38554 23399 3115 12040 21336 13530 6389 1417 6316 4188 1740 388 37053 35556 1201 296 19751 19193 467 91 26464 16781 7926 1757 11340 7190 3397 753 EVENT 88111 88111 PRINTING AND PUBLICATIO 22513 17509 3982 1022 MISCELLANEOUS 5110 3040 1829 241 SUPPLIES 4788 3056 1278 454 7297 4727 2092 478 1013221 732324 231397 49500 104771 106922 120800 17158 685696 312725 0 2850 30108 79246 1173666 318301 881829 855365 1834702 1868620 3657906 3242886 143971 127963 13000 3250 156971 131213 X 2680717 2745818 820218 365855 3500935 3111673 3657906 3242886 -440998 51736 0 X X 0 1 X 1 0 X 376239 2267155 311772 392340 507967 3855473 376239 2267155 311772 392340 507967 3855473 3855473 34901 34072 29338 63713 59726 221750 256441 256441 156 1429 24 4012 10113 15734 4349398 0.88640 0.89090 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 0 0 0 0 1 558 0 0 558 0 PART II-B, LINE 1: MARCH 20, 2023 TWO STAFF MEMBERS ATTENDED ALBANY LEGISLATIVE DAYS AND MET WITH SENATORS AND ASSEMBLYMEN APPROXIMATELY 4 HOURS OF TIME. BASED ON THEIR HOURLY RATE, THE EXPENSE WOULD BE $558 TOTAL LOBBYING TIME. 95000 95000 1000462 262577 737885 25666 3186 22480 13669 13669 0 38869 38869 0 855365 X 614757 51736 51736 563021 9202 9202 572223 1004019 0 1004019 9202 9202 1013221 PART X, LINE 2: THE ORGANIZATION RECOGNIZES THE EFFECT OF INCOME TAX POSITIONS ONLY IF THOSE POSITIONS ARE MORE LIKELY THAN NOT OF BEING SUSTAINED. MANAGEMENT HAS DETERMINED THAT THE ORGANIZATION HAD NO UNCERTAIN TAX POSITIONS THAT WOULD REQUIRE FINANCIAL STATEMENT RECOGNITION OR DISCLOSURE. THE ORGANIZATION IS NO LONGER SUBJECT TO EXAMINATIONS BY THE APPLICABLE TAXING JURISDICTIONS FOR THE PERIODS PRIOR TO JUNE 30, 2020. GREER GOLF 249441 139956 109485 1750 107735 MOHONK 87700 87700 1 80693 80693 417834 308349 109485 1750 107735 109485 0 0 THE ROCKEFELLER UNIVERSITY 1230 YORK AVENUE NEW YORK NY 100656399 131624158 501 C 3 63851 0 RESEARCH B LYMPHOID EXPRESSION OF COAGULATION FACTORS THROUGH GENE-EDITED HEMA. S-CELLS MATTHEW L GREER CHILDREN'S FUND 860 NEWTON STREET CHESTNUT HIL MA 02467 264409185 501 C 3 84000 0 TO PROVIDE MEDICAL CARE AND ACADEMIC SUPPORT TO CHILDREN IMPACTED BY CRITICAL ILLNESS 2 CATHERINE MCGUINN 1 2885 INDIVIDUALS - HIGHER EDUCATION ASSISTANCE 10 46547 MEDICAL ALERT & OTHER SUPPLIES/ASSISTANCE TO INDIVIDUALS 55 906 5980 FMV MEDICAL ALERT SERVICES AND SUPPLIES PART I, LINE 2 THE ORGANIZATION REQUIRES GRANT RECIPIENTS TO SUBMIT PERIODIC REPORTS DETAILING THE USE OF GRANT FUNDS TO ENSURE THAT GRANTS ARE UTILIZED FOR INTENDED PURPOSES. ALL REQUESTS ARE GRANTED AFTER THE SELECTION COMMITTEE REVIEWS THE APPLICATIONS. ALL GRANT EXPENDITURES MUST BE RELATED TO BLEEDING DISORDERS/MEDICAL CONDITIONS. INDIVIDUALS RECEIVING DIRECT PATIENT ASSISTANCE MUST PROVIDE DOCUMENTATION/PROOF OF FINANCIAL HARDSHIP. X X X 0 0 0 0 0 0 0 0 0 LINDA E MUGFORD EXECUTIVE DIRECTOR 158963 0 0 0 0 0 20161 0 19769 0 198893 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 -EXECUTIVE DIRECTOR LINDA MUGFORD AND BOARD TRUSTEE JOSEPH MUGFORD HAVE A FAMILY RELATIONSHIP. -BOARD TRUSTEE BRIAN EGAN AND BOARD CHAIR MARIAM VOUTSIS HAVE A FAMILY RELATIONSHIP FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS REVIEWED BY THE EXECUTIVE DIRECTOR AND A COMPLETE COPY OF THE RETURN IS PROVIDED TO THE BOARD OF TRUSTEES PRIOR TO SUBMISSION TO THE IRS. FORM 990, PART VI, SECTION B, LINE 12C THE ORGANIZATION HAS A CONFLICT OF INTEREST POLICY WHICH COVERS OFFICERS, TRUSTEES, COMMITTEE MEMBERS, SENIOR STAFF MEMBERS, AND CONSULTANTS REQUIRING THEM TO DISCLOSE ANY POSSIBLE CONFLICTS TO THE BOARD OF TRUSTEES (OR THE COMMITTEE OF THE ASSOCIATION). THIS IS DONE ON AN ANNUAL BASIS AND AS ANY POTENTIAL CONFLICTS ARISE. IT IS THE RESPONSIBILITY OF THE BOARD OF TRUSTEES TO DETERMINE WHETHER A CONFLICT OF INTEREST EXISTS, AND TO REVIEW CONFLICTS ONCE DETERMINED. ANY PERSON WITH A CONFLICT IS RECUSED FROM VOTING ON THE MATTER, AND PARTICIPATING IN FINAL DELIBERATIONS. SUCH MATTERS ARE DOCUMENTED IN THE MINUTES OF THE BOARD OF TRUSTEES. FORM 990, PART VI, SECTION B, LINE 15A COMPENSATION OF THE EXECUTIVE DIRECTOR IS DETERMINED BY THE BUDGET COMMITTEE WHO PERFORMS A MARKET REVIEW OF EXECUTIVE COMPENSATION USING THE FORM 990S OF SIMILAR ORGANIZATIONS AND COMPENSATION SURVEYS. BUDGET COMMITTEE REVIEWS AND MAKES RECOMMENDATIONS TO THE BOARD FOR BOARD VOTE. THE BOARD APPROVES THE COMPENSATION AND THE APPROVAL IS DOCUMENTED IN THE MINUTES OF THE MEETING. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S FORM 990 IS MADE AVAILABLE FOR PUBLIC INSPECTION AS REQUIRED UNDER SECTION 6104 OF THE INTERNAL REVENUE CODE. IT IS POSTED ON THE NEW YORK STATE ATTORNEY GENERAL WEBSITE, GUIDESTAR.ORG AND OTHER SIMILAR TYPES OF WEBSITES. IN ADDITION, THE FORM 990, GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS ARE AVAILABLE TO THE PUBLIC UPON WRITTEN REQUEST AT 131 WEST 33RD STREET, SUITE 11D, NEW YORK, NY 10001 OR BY CALLING THE ORGANIZATION DIRECTLY AT (212) 682-5510. FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF AN INDEPENDENT ACCOUNTANT. THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.