2025-02-26T10:51:51-06:00 2024-12-31 133632313 TOBIN & COMPANY CPA'S 2500 WESTCHESTER AVENUE PURCHASE NY 10577 990 2024-01-01 853259676 HUNTERS CMT4B3 RESEARCH FOUNDATION INC HUNT 9145898047 77 GARDEN RD SCARSDALE NY 10583 IRIS SCHULTZ PRESIDENT 9145898047 2025-02-26 1 0 BRIAN WIENER P03038904 9148332200 2024 2025-03-06 01:10:19Z IRIS SCHULTZ 77 GARDEN ROAD SCARSDALE NY 10583 593393 0 X WWW.CMT4B3RESEARCH.ORG X 2020 DE TO FUND SCIENTIFIC RESEARCH LEADING TO THE DISCOVERY AND DEVELOPMENT OF CURES FOR CMT4B3. 8 8 0 0 0 0 388949 467417 0 0 18180 33418 0 0 407129 500835 252254 189118 0 0 0 0 0 0 15893 35143 59078 287397 248196 119732 252639 824518 1099881 8834 12155 815684 1087726 X TO FUND SCIENTIFIC RESEARCH LEADING TO THE DISCOVERY, DEVELOPMENT, AND CLINICAL APPLICATIONS FOR THEREPEUTIC TREATMENTS AND CURES FOR CHARCOT-MARIE-TOOTH DISEASE TYPE 4B3 (CMT 4B3), AND TO IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH CMT4B3. 0 0 215716 189118 CMT4B3 AWARDS RESEARCH FELLOWSHIP AND GRANTS FOR RESEARCH ON CHARCOT-MARIE-TOOTH DISEASE TYPE 4B3. IT ALSO HOSTS BI-ANNUAL MEETINGS OF ALL RESEARCHERS RECEIVING ITS FUNDING AND ITS SCIENTIFIC ADVISORY BOARD TO PROMOTE KNOWLEDGE EXCHANGE AND SYNERGY. IT USES THE SERVICES OF ITS SCIENTIFIC ADVISORY BOARD TO CAREFULLY OVERSEE AND REVIEW THE SELECTION OF THE RECIPIENTS OF THE RESEARCH FUNDING. THE SAB EVALUATES EACH PROPOSAL BASED ON THE EXCELLENCE OF THE INVESTIGATOR, THE WORK PLAN AND THE PROPOSALS' ABILITY TO BE TRANSLATED INTO TREATMENTS FOR PEOPLE WITH CMT4B3. APPLICATIONS ARE REVIEWED ON A ROLLING BASIS. THE LAW FIRM OF KATTEN MUCHIN ROSENMAN, LLP WRITES THE GRANT AGREEMENT CONTRACTS WITH THESE RESEARCHERS, UNIVERSITIES, OR ACADEMIC INSTITUTIONS.THE BOARD MEMBERS, IRIS SCHULTZ AND ROBIN SCHULTZ, ATTEND THE YEARLY MEETING OF THE PERIPHERAL NERVE SOCIETY. CMT4B3 IS LISTED AS A PATIENT RESOURCE OF THE PNS. ATTENDANCE AT THE PNS GIVES BOARD MEMBERS THE ABILITY TO MEET WITH AND EXCHANGE IDEAS WITH INTERNATIONAL RESEARCHERS OF CMT AND CMT4B3. IRIS SCHULTZ WAS INVITED AS THE KEYNOTE SPEAKER FOR THE MAYO CLINIC'S FUNCTIONAL OMICS SYMPOSIUM, AND IRIS ALSO SERVED AS CO-PANELIST FOR COLUMBIA BUSINESS SCHOOL WOMEN IN BUSINESS EVENT.CMT4B3 MAINTAINS A WEBSITE FOR PATIENTS, THEIR FAMILIES AND MEDICAL PRACTITIONERS TO ASSIST IN UNDERSTANDING AND TREATING CHARCOT-MARIE-TOOTH DISEASE TYPE 4B3. THE WEBSITE CONTAINS LINKS TO OUR RESEARCH PROJECTS, A NEW PATIENT PORTAL TO JOIN OUR NEUROGENETICS REGISTRY AND THE ABILITY TO JOIN OUR NATURAL HISTORY STUDIES. CMT4B3 PRODUCES EDUCATIONAL MATERIALS DISSEMINATED AT CONFERENCES AND AT PUBLIC EVENTS TO RAISE AWARENESS. CMT4B3 MAINTAINS CLIENT MANAGEMENT SOFTWARE. IT RETAINS ACCOUNTING SERVICES. CMT4B3 FOUNDATION IS COMPOSED OF VOLUNTEERS WHO WORK FROM HOME AND DO NOT TAKE ANY SALARIES.THE FOUNDATION MAINTAINS A BIOREPOSITORY OF CMT4B3 CELLULAR MODELS AND RENEWABLE BIOLOGICAL RESOURCES AT SAMPLED, LOCATED IN PISCATAWAY, NEW JERSEY. THE FOUNDATION COLLECTS AND STORES MOLECULAR BIOLOGY SAMPLES FROM CMT4B3 PATIENTS AND THEIR IMMEDIATE FAMILY MEMBERS AT NO COST TO THE PATIENTS. SAMPLES ARE PROVIDED TO LABORATORIES AND RESEARCHERS WORLDWIDE AT NO COST, UPON REQUEST. THE SCIENTIFIC ADVISORY BOARD MEMBERS ARE REQUIRED TO SIGN CONFIDENTIALITY AGREEMENTS. 215716 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 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 X 8 8 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 0 1 0 0 0 NY X X X X IRIS SCHULTZ 9174532319 77 GARDEN RD SCARSDALE NY 10583 X AMY CAYNE SCHWARTZ DIRECTOR 1.00 X 0 0 0 LIANNE CHAN CAPPO DIRECTOR 0.50 X 0 0 0 MANDEEP KAUR CHOHAN DIRECTOR 0.50 X 0 0 0 LINDSAY ZAKEN SECRETARY 5.00 X 0 0 0 HARRY FEINBERG DIRECTOR 5.00 X 0 0 0 IRIS SCHULTZ PRESIDENT 45.00 X 0 0 0 BRETT SCHULTZ VICE PRESIDENT 5.00 X 0 0 0 ROBIN SCHULTZ TREASURER 45.00 X 0 0 0 0 0 0 0 0 0 0 0 262535 204882 467417 33418 33418 92558 262535 92558 0 500835 33418 0 0 169548 169548 19570 19570 8106 8106 175 175 8132 8132 3222 3222 8122 8122 587 587 RESEARCH EXPENSE 17735 17735 CREDIT CARD PROCESSING 7574 7574 DUES AND SUBSCRIPTIONS 5088 741 4347 POSTAGE AND SHIPPING 187 187 150 150 248196 215716 16587 15893 144274 85347 5000 5000 675244 1009534 824518 1099881 8834 12155 8834 12155 X 815684 1087726 815684 1087726 824518 1099881 252639 19404 0 X X 1 X 0 1 0 X 111190 620436 347900 184066 204882 1468474 276963 355093 632056 111190 620436 347900 461029 559975 2100530 0 0 0 2100530 2 4265 18182 51335 73784 2 4265 18182 51335 73784 111190 620438 352165 479211 611310 2174314 0.96610 0.98560 0.03390 0.01440 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 520063 19404 19404 500659 175 175 500834 248021 0 248021 175 175 248196 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANT MAKING RESEARCH GRANTS 29163 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANT MAKING RESEARCH GRANTS 19570 0 0 0 0 0 0 48733 0 48733 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM INVESTIGATING CMT4B3 29163 WIRE 0 FMV NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES INVESTIGATING CMT4B3 19570 WIRE 0 FMV 0 0 0 0 0 0 PART I, LINE 2: CMT4B3 REQUIRES (BY CONTRACT) PERIOD PROGRESS REPORTS ON THE FUNDED RESEARCH. THE PROGRESS REPORTS ARE REVIEWED BY THE SCIENTIFIC ADVISORY BOARD AND THE BOARD OF DIRECTORS. ITS GRANT AGREEMENT CONTRACTS ALSO INCLUDE A FULL RESEARCH PLAN WITH BUDGETS AND DELIVERABLES. CMT4B3 USES THE SERVICES OF ITS SCIENTIFIC ADVISORY BOARD WHEN REVIEWING INTERNATIONAL GRANTEES, TO CAREFULLY OVERSEE AND REVIEW THE SELECTION OF THE RECIPIENTS OF THE RESEARCH FUNDING. THE SAB EVALUATES EACH PROPOSAL BASED ON THE EXCELLENCE OF THE INTERNATIONAL INVESTIGATOR, THE WORK PLAN, AND THE PROPOSALS' ABILITY TO BE TRANSLATED INTO TREATMENTS FOR PEOPLE. WITH CMT4B3. APPLICATIONS ARE REVIEWED ON A ROLLING BASIS. SUPPLEMENTAL INFORMATION (PART V, OTHER) PROFESSOR HENRY HOULDEN, UNIVERSITY COLLEGE LONDON, QUEENS SQUARE WE HAVE DETAILED CLINICAL NOTES AND MRI'S FROM NEW YORK, UK, AND SPANISH CMT4B3 FAMILIES. TO UNDERSTAND DISEASE ONSET AND PROGRESSION WE PLAN TO EXPAND THE KNOWLEDGE OF THE NATURAL HISTORY OF CMT4B3 AND OBTAIN CLINICAL FEATURES, CLINICAL SCALES AND SERIAL MRI SCANS AS MARKERS OF CMT4B3 PROGRESSION, FROM A FURTHER EIGHT FAMILIES WITH BIALLELIC SBF1 MUTATIONS WITH A RANGE OF REPORTED DISEASE SEVERITIES. WE HAVE NOT REQUESTED FUNDING FOR MRI'S, NEUROPHYSIOLOGY OR CLINICAL ASSESSMENT OF PATIENTS BUT WE WISH TO OBTAIN (WITH PATIENT/FAMILY PERMISSION) MRI DETAILS, NEUROPHYSIOLOGY OR CLINICAL ASSESSMENTS (IDEALLY CMT RATING SCALES) FOR THE NATURAL HISTORY THAT ARE PART OF THEIR CLINICAL CARE IN THEIR COUNTRY. PROFESSOR JIM DOWLING - SICK KIDS HOSPITAL - DRUG DISCOVERY FOR CMT4B3 USING ZEBRAFISH MODEL PATIENTS WITH CMT4B3 HAVE BIALLELIC, LOSS OF EXPRESSION/FUNCTION MUTATIONS IN MTMR5. USING CRISPR/CAS9 GENE EDITING, WE WILL ACCURATELY MODEL THE DISEASE BY CREATING BIALLELIC NULL MUTATIONS IN MTMR5. WE WILL CHARACTERIZE THE RESULTING PHENOTYPE OF THESE MTMR5 "KNOCKOUT" FISH, WITH AN EMPHASIS ON IDENTIFYING PHENOTYPES SUITABLE FOR DRUG SCREENING. GOLF OUTING 355093 262535 92558 72783 19775 355093 262535 92558 72783 19775 92558 0 1 JOHNS HOPKINS 3400 N CHARLES ST BALTIMORE MD 21218 40000 0 DISCOVERING CELL TYPE SPECIFIC BIOLOGY OF MTMR5 UNIVERSITY OF MIAMI 1320 S DIXIE HIGHWAY MIAMI FL 33146 100384 0 DEVELOPING HUMAN PLATFORMS FOR THERAPY DEVELOPMENTS PART I, LINE 2: THE FOUNDATION REQUIRES BY CONTRACT PERIOD PROGRESS REPORTS ON THE FUNDED RESEARCH. THE PROGRESS REPORTS ARE REVIEWED BY THE SCIENTIFIC ADVISORY BOARD AND THE BOARD OF DIRECTORS. ITS GRANT AGREEMENT CONTRACTS ALSO INCLUDE A FULL RESEARCH PLAN WITH BUDGETS AND DELIVERABLES. THE FOUNDATION USES THE SERVICES OF ITS SCIENTIFIC ADVISORY BOARD WHEN REVIEWING DOMESTIC GRANTEES, TO CAREFULLY OVERSEE AND REVIEW THE SELECTION OF THE RECIPIENTS OF THE RESEARCH FUNDING. THE SAB EVALUATES EACH PROPOSAL BASED ON THE EXCELLENCE OF THE DOMESTIC INVESTIGATOR, THE WORK PLAN AND THE PROPOSALS ABILITY TO BE TRANSLATED INTO TREATMENTS FOR PEOPLE WITH CMT4B3. APPLICATIONS ARE REVIEWED ON A ROLLING BASIS. ADDITIONAL INFORMATION FOR SCHEDULE I MARIO SAPORTA - UNIVERSITY OF MIAMI PURPOSE: DEVELOPING HUMAN PLATFORMS FOR THERAPY DEVELOPMENT FOR CMT4B3 - PATIENT-DERIVED MOTOR NEURONS, SENSORY NEURONS AND GLIAL CELLS IN 3D CULTURE SYSTEMS SAPORTA'S LABORATORY HAS SPENT THE LAST FIVE YEARS DEVELOPING HUMAN IN VITRO CELLULAR MODELS TO STUDY AXONAL PHENOTYPES IN INHERITED PERIPHERAL NEUROPATHIES (CHARCOT-MARIE-TOOTH DISEASE, CMT). HE WILL USE THIS SYSTEM TO INVESTIGATE DISEASE PHENOTYPES IN HUMAN CMT4B3 PATIENT-DERIVED MOTOR NEURONS AND TO EXPAND THIS PLATFORM TO ALSO INCLUDE SENSORY NEURONS AND SCHWANN CELLS, MAJOR CELL TYPES INVOLVED IN THE BIOLOGY OF CMT4B3. OUR GOAL IS TO USE THESE RESOURCES TO VALIDATE GENE REPLACEMENT THERAPY STRATEGIES AND IDENTIFY SMALL MOLECULE CANDIDATES USING HIGH CONTENT SCREENING TO TREAT CMT4B3. JASON CHUA - JOHN HOPKINS PURPOSE: DISCOVERING THE CELL-TYPE SPECIFIC BIOLOGY OF MTMR5 USING A NOVEL IPSC-DERIVED MODEL SYSTEM OF CMT4B3 AIM 1: ESTABLISH A PSN MODEL SYSTEM OF CMT4B3 AIM 2: DISCOVER THE NEUTRAL INTERACTOME OF MTMR5 FORM 990, PART VI, SECTION A, LINE 2 IRIS AND BRETT SCHULTZ ARE MARRIED ROBIN SCHULTZ IS BRETT'S MOTHER LINDSAY ZAKEN IS THE NIECE OF ROBIN SCHULTZ FORM 990, PART VI, SECTION B, LINE 11B HUNTERS CMT4B3 RESEARCH FOUNDATION PROVIDES AND ELECTRONIC COPY OF THE DRAFT FORM 990 TO ALL BOARD MEMBERS PRIOR TO FILING, AS WELL AS THE FINAL COPY FILED WITH THE IRS TO BE KEPT IN THEIR BOARD NOTEBOOK. FORM 990, PART VI, SECTION B, LINE 12C ALL BOARD MEMBERS AND OFFICERS FILL OUT AND SIGN A DOCUMENT ANNUALLY ASSERTING THEY HAVE READ AND UNDERSTOOD THE CONFILCT OF INTEREST POLICY AND DISCLOSE THEIR COMPLIANCE. THE CONFLICT OF INTEREST POLICY IS REVIEWED AND UPDATED ANNUALLY. THE ORGANIZATION HAS AN ANNUAL WORKSHOP FOR ALL BOARD MEMBERS. THE BOARD CHAIRMAN AND CEO REVIEW AND MONITOR THE CONFLICT OF INTEREST DISCLOSURES. IF A CONFLICT OF INTEREST IS IDENTIFIED, THE RESPONSIBLE PERSON SHALL REFRAIN FROM ANY ACTION THAT MAY AFFECT CMT4B3'S PARTICIPATION IN SUCH CONTRACT OF TRANSACTION. FORM 990, PART VI, SECTION C, LINE 18 THE 990 IS AVAILABLE THROUGH GUIDESTAR AND ON THE IRS WEBSITE FORM 990, PART VI, SECTION C, LINE 19 COPIES ARE SENT UPON WRITTEN REQUEST. FORM 990, PART XII, LINE 2C THE ORGANIZATION HAS NOT CHANGED ITS OVERSIGHT PROCESS DURING THE YEAR.