2024-11-15T16:46:48-05:00 2023-12-31 472399509 WORTHINGTON HUGHES & HOAR PC 400 W CUMMINGS PARK STE 3000 WOBURN MA 018016592 990 2023-01-01 043013709 NEUROFIBROMATOSIS INC NORTHEAST NEUR 7812729936 9 BEDFORD STREET BURLINGTON MA 01803 SHARON KLEIN EXECUTIVE DIRECTOR 7812729936 2024-11-15 true true KEVIN E WORTHINGTON P00189847 7813053534 2024-11-15 2023 2024-10-15 13:58:12Z JOHN MANTH 9 BEDFORD STREET BURLINGTON MA 01803 847628 false X HTTP://WWW.NFNORTHEAST.ORG X MA THE MISSION OF NEUROFIBROMATOSIS, INC. NORTHEAST IS TO RAISE FUNDS TO SUPPORT THE RESEARCH OF HTE CAUSES, CURE NAD TREATMENT OF A DISEASE DESCRIBED AS NEUROFIBROMATOSIS, TO PROMOTE AND PROVIDE SUPPORT SERVICES TO PATIENTSS AND THEIR FAMILIES, TO SUPPORT CLINICS DEDICATED TO DIAGNOSIS AND TREATMENT AND TO SUPPORT PROGRAMS INTENDED TO INCREASE AWARENESS OF THE DISEASE. 15 15 6 0 360789 383694 0 41112 1150 215076 174132 616977 558976 87867 20000 0 382662 400169 0 115424 181296 222278 651825 642447 -34848 -83471 842757 784530 19830 25453 822927 759077 X THE DIAGNOSIS AND TREATMENT AND TO SUPPORT PROGRAMS INTENDED TO INCREASE AWARENESS OF NEUROFIBROMATOSIS. false false 20000 20000 RESEARCH- SUPPORT AND REASEARCH THROUGH MAKING GRANTS FOR THE STUDY INTO THE CAUSES, CURE AND TREATMENT OF NEUROFIBORMATOSIS. 293340 PATIENT AND FAMILY SUPPORT - NEUROFIBROMATOSIS, INC. NORTHEAST ACTS AS A RESOURCE FOR PATIENTS WHO ARE LOOKING FOR PHYSICIANS AND SPECIALISTS AT THE NF CLINICS. THE ORGANIZATION ENCOURAGES VOLUNTEERISM AT OUR EVENTS WHERE NEUROFIBROMATOSIS PATIENTS CAN MEET OTHERS WHO ARE AFFECTED. THE ORGANIZATION ORGANIZES GATHERINGS OF PATIENTS, FAMILIES AND FRIENDS, WHERE THEY ARE PROVIDED RESEARCH, MEDICAL UPDATES AND SCHOLARSHIPS FOR CHILDREN TO ATTEND NEUROFIBORMATOSIS CAMP. 25035 LOBBYING- NEUROFIBROMATOSIS, INC. NORTHEAST LOBBIED CONGRESS FOR INCREASED FUNDING FOR NEUROFIBROMATOSIS RESEARCH AT BOTH THE NATIONAL INSTITUTE OF HEALTH AND THE ARMY'S NEUROFIBROMATOSIS RESEARCH PROGRAM. AWARENESS - AS A VEHICLE FOR EDUCATION ABOUTN NEUROFIBROMATOSIS MATTERS TO THE AFFECTED COMMUNITY AS WELL AS THE POPULATION AT LARGE, THE ORGANIZATION PUBLISHES A NEWSLETTER AND BORCHURES, MAINTAINS A WEBSITE AND RUNS OCCATIONAL RADIO SPOTS. 338375 true true false true false false false false false false true false false false false true true false false false false false false false true false false true false false false false false false false false false false false false false false false false false false false true 4 0 false 6 true false false false false false false false false X 15 15 true false false false false false false true true false false false true true true true true true false false MA X X X SHARON KLEIN 7812729936 9 BEDFORD STREET BURLINGTON MA 01803 SHARON KLEIN EXECUTIVE DI 40.00 X 133692 0 4305 FRANK BUONO DIRECTOR X 0 0 0 BEN BUTTRICK DIRECTOR X 0 0 0 PATRICK CALLAHAN DIRECTOR X 0 0 0 ALEXANDRA POWERS CELLUCCI DIRECTOR X 0 0 0 TAMARA INDIANER DIRECTOR X 0 0 0 JUSTIN JORDAN DIRECTOR X 0 0 0 ANDRES LESSING DIRECTOR X 0 0 0 ANDRES LESSING TREASURER X X 0 0 0 MELISSA SHEA MALERBA DIRECTOR/ SE X X 0 0 0 JOHN MANTH CHAIRPERSON X X 0 0 0 THERESA OWHADY DIRECTOR X 0 0 0 NICOLE ULLRICH MD PHD DIRECTOR X 0 0 0 KRISTINA RATH DIRECTOR X 0 0 0 MARYBETH SHAW DIRECTOR X 0 0 0 JOHN SHEA DIRECTOR X 0 0 0 JOHN THOMSON DIRECTOR X 0 0 0 133692 4305 1 false false false 241054 142640 383694 14248 14248 89659 185 102942 -13283 185 -13098 -13098 359842 241054 185710 174132 174132 558976 -13098 188380 20000 20000 133692 40108 46792 46792 234695 85056 94698 54941 7294 4376 2262 656 24488 14693 7591 2204 10010 6006 3103 901 39030 23418 12099 3513 33278 19967 10316 2995 1066 640 330 96 6364 3818 1973 573 6357 3814 1971 572 CLINC SUPPORT 42847 42847 ADVOCACY 25035 25035 BANK AND OTHER FEES 20223 12134 6269 1820 FAMILY SUPPORT 13375 13375 24693 23088 1244 361 642447 338375 188648 115424 325701 242846 170730 177144 20812 29917 18966 14016 5433 4950 310545 324903 9536 4770 842757 784530 15563 25453 4267 19830 25453 X 728772 628619 94155 130458 822927 759077 842757 784530 -83471 21966 -2345 X false false X 649603 376585 574054 360789 383694 2344725 197552 61560 133680 215076 174132 782000 847155 438145 707734 575865 557826 3126725 8947 8947 72157 40075 163866 147440 423538 81104 40075 163866 147440 432485 2694240 6274 5248 5655 13556 14248 44981 6274 5248 5655 13556 14248 44981 853429 443393 713389 589421 572074 3171706 0.84950 0.85020 0.01000 0.01000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false false false false false false false false false false SCHEDULE C, PART II-B, LINE 1 PART II-B, LINE 1, LOBBYING ACTIVITIES: THE ORGANIZATION VISTS WITH LEGISLATORS AND/OR THEIR STAFF IN WASHINGTON DC OR THEIR OFFICES. THE ORGANIZATION ENCOURAGES LEGISLATORS TO CONTINUE THE GOVERNMENT'S INVESTMENT IN NEUROFIBROMATOSIS RESEARCH. NF RESEARCH PROJECTS ARE CURRENTLY BEING CONDUCTED AT THE NAITONAL INSTITUES OF HEALTH AND THE U.S. ARMY MEDICAL RESEARCH AMD MATERIAL COMMAND NEUROFIBROMATOSIS, INC. NORTHEAST DOES NOT RECEIVE ANY FUNDS AS A RESULT OF THIS EFFORT. HOWEVER AS A RESULT OF THE LOBBYING, NF RESEARCH AT THE FEDERAL LEVEL HAS INCREASED. 18966 14016 4950 4950 X 558976 558976 558976 642447 642447 642447 SCHEDULE D, PAGE 3, PART X NO UNCERTAIN TAX POSITIONS. false INTERNATIONAL G 151229 104100 47129 76381 STEPS2CURE 117822 43404 74418 28889 6 307332 93550 213782 71590 576383 241054 335329 176860 176860 158469 false MASSACHUSETTS EYE & EAR INFIRMARY PO BOX 412356 BOSTON MA 02241 501(C) 20000 FMV N/A RESEARCH FORM 990, PAGE 2, PART III, LINE 4D AWARENESS - AS A VEHICLE FOR EDUCATION ABOUTN NEUROFIBROMATOSIS MATTERS TO THE AFFECTED COMMUNITY AS WELL AS THE POPULATION AT LARGE, THE ORGANIZATION PUBLISHES A NEWSLETTER AND BORCHURES, MAINTAINS A WEBSITE AND RUNS OCCATIONAL RADIO SPOTS. FORM 990, PAGE 6, PART VI, LINE 2 LORI RYAN ROBERT RYAN CHAIR TREASURER BROTHER/SISTER IN LAW MELISSA MALERBA JOHN SHEA SECRETARY BOARD MEMBER FATHER/DAUGHTER FORM 990, PAGE 6, PART VI, LINE 11B THE FORM 990 IS EMAILED TO HE GOVERNING BODY MEMBERS VIA CONFIRM RECEIPT EMAIL. THE ORGANIZATION'S GOVERNING BODY REVIEWS THE FORM 900. FORM 990, PAGE 6, PART VI, LINE 12C THE ORGANIZATION REQUIRES ALL BOARD MEMBERS TO READ AND SIGN A CONFLICT OF INTEREST POLICYH. THEY REVIEW AND SIGN THE POLICY ANNUALLY. FORM 990, PAGE 6, PART VI, LINE 15A THE BOARD MEETS ANNUALLY AND REVIEWS ATHE EXECUTIVE DIRECTOR'S PERFORMANCE AND COMPARES THE SALARY TAO OTHER EXECUTIVE DIRECTORS AT SIMILAR ORGANIZATIONS. BASED ON THIS ANALYSIS THE EXECUTIVE DIRECTOR'S SALARY IS DETERMINED AND APPROVED BY THE BOARD OF DIRECTORS. FORM 990, PAGE 6, PART VI, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS AND FORMS 990 ARE AVAILABLE FOR INSPECTION AT THE ORGANIZATION'S OFFICE.