2026-02-13T07:57:34-06:00 2025-12-31 133632313 TOBIN & COMPANY CPA'S 2500 WESTCHESTER AVENUE PURCHASE NY 10577 990 2025-01-01 853259676 HUNTERS CMT4B3 RESEARCH FOUNDATION INC HUNT 9174532319 180 EAST 79TH STREET 3D NEW YORK NY 10075 IRIS SCHULTZ PRESIDENT 9145898047 2026-02-12 1 BRIAN WIENER CPA P03038904 9148332200 2025 2025-03-06 01:10:19Z X IRIS SCHULTZ 180 EAST 79TH STREET 3D NEW YORK NY 10075 701889 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 467417 558628 0 0 33418 50082 0 0 500835 608710 189118 208468 0 0 0 0 0 0 15765 59078 51364 248196 259832 252639 348878 1099881 1476047 12155 11921 1087726 1464126 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 219795 208468 CMT4B3 AWARDS RESEARCH FELLOWSHIP AND GRANTS FOR RESEARCH ON CHARCOT-MARIE-TOOTH DISEASE TYPE 4B3. IT ALSO HOSTS 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 AND THE CMTRF ANNUAL CONFERENCE. 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.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. 219795 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 180 EAST 79TH STREET 3D NEW YORK NY 10075 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 338647 219981 558628 50082 50082 93179 338647 93179 0 608710 50082 0 0 189659 189659 18809 18809 7250 7250 95 95 12009 543 780 10686 6156 1101 5055 11330 10132 1198 863 863 CREDIT CARD PROCESSING 8011 8011 DUES AND SUBSCRIPTIONS 5268 652 4616 FEES AND LICENSES 324 324 POSTAGE AND SHIPPING 58 34 24 259832 219795 24272 15765 85347 73725 5000 0 1009534 1402322 1099881 1476047 12155 11921 12155 11921 X 1087726 1464126 1087726 1464126 1099881 1476047 348878 27523 0 X X 1 X 0 1 0 X 620436 347900 184066 204882 219981 1577265 276963 355093 431826 1063882 620436 347900 461029 559975 651807 2641147 0 0 0 2641147 2 4265 18182 52823 77510 152782 2 4265 18182 52823 77510 152782 620438 352165 479211 612798 729317 2793929 0.94530 0.96610 0.05470 0.03390 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES GRANT MAKING RESEARCH GRANTS 18809 0 0 0 0 0 0 18809 0 18809 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES INVESTIGATING CMT4B3 18809 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 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 431826 338647 93179 60918 1750 30511 431826 338647 93179 60918 1750 30511 93179 0 1 JOHNS HOPKINS 3400 N CHARLES ST BALTIMORE MD 21218 80000 0 DISCOVERING CELL TYPE SPECIFIC BIOLOGY OF MTMR5 UNIVERSITY OF MIAMI 1320 S DIXIE HIGHWAY MIAMI FL 33146 87992 0 DEVELOPING HUMAN PLATFORMS FOR THERAPY DEVELOPMENTS JOHNS HOPKINS 733 N BROADWAY SUITE 117 BALTIMORE MD 21205 21667 0 MOUNT EYE CHARACTERIZATION AND TREATMENT DEVELOPMENT 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 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 DR. STEPHAN ZUCHNER, UNIVERSITY OF MIAMI PURPOSE: MTMR5 MINIGENE CONSTRUCTION AND VALIDATION TO CURE CMT4B3. AIM 1: CONSTRUCT UP TO 20 CANDIDATE MTMR5 MINIGENE IN SILICO MODELS, BASED ON STRUCTURAL, CONSERVATION, AND OTHER CONSIDERATIONS AIM 2: TEST THESE MODELS IN DIFFERENT PROTEIN MODELING PROGRAMS AND ITERATIVELY IMPROVE UPON THEIR DESIGN. SELECT THE 5 BEST MODELS. AIM 3: SYNTHESIZE THE 5 BEST MTMR5 MODELS, CREATE VECTORS FOR IN VITRO CELL TRANSFECTION OF HEK293 OR SIMILAR CELL FOR EVALUATING TOXICITY. DR. JEFFERSON DOYLE PURPOSE: OCULAR PHENOTYPING OF MOUSE MODEL FOR CMT4B3 AIM 1: OCULAR IMAGING OF SBF1 MICE TO EVALUATE FOR AXIAL MYOPIA AND OTHER OCULAR PATHOLOGY. AIM 2: EVALUATE THE EFFECT OF ATROPINE EYE DROPS ON EYE GROWTH IN SBF1 MICE AIM 3: EX-VIVO EVALUATION OF EYES AND OTHER TISSUES IN PLACEBO AND ATROPINE TREATED SBF1 MICE 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 CONFLICT 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.