2026-08-28T15:27:06+00:00 2025-12-31 311119890 BARNES DENNIG & CO LTD 150 EAST 4TH ST CINCINNATI OH 45202 990 2025-01-01 311682518 INTERNATIONAL RETT SYNDROME FOUNDATION INTE 5138743020 4500 COOPER ROAD SUITE 204 CINCINNATI OH 45242 LAURA HAMEED CHIEF EXECUTIVE OFFICER 5138743020 2026-08-28 true PAULA L HUME P00537516 5132418313 2026-08-28 2025 LAURA HAMEED 4500 COOPER ROAD SUITE 204 CINCINNATI OH 45242 5066382 false X WWW.RETTSYNDROME.ORG X 1999 OH IRSF HAS A DUAL MISSION TO ACCELERATE RESEARCH AND TREATMENTS WHILE ALSO SUPPORTING AND EDUCATING FAMILIES LIVING WITH RETT SYNDROME. 10 10 16 200 0 3808219 3822542 334015 323344 261285 187696 410229 -67647 4813748 4265935 1856999 1611176 0 0 1288538 1415448 0 0 577424 2385485 2163484 5531022 5190108 -717274 -924173 5325567 4707103 338142 307411 4987425 4399692 TO ACCELERATE FULL SPECTRUM RESEARCH TO CURE RETT SYNDROME AND EMPOWER FAMILIES WITH INFORMATION, KNOWLEDGE, AND CONNECTIVITY. false false 3549456 1611176 323344 IRSF ADVANCES THE FULL SPECTRUM OF RETT SYNDROME RESEARCH - FROM BASIC SCIENCE TO CLINICAL DEVELOPMENT - WITH THE SINGULAR GOAL OF DELIVERING EFFECTIVE TREATMENTS AND, ULTIMATELY, A CURE. WE FUND TRANSLATIONAL RESEARCH GRANTS WORLDWIDE TO DEVELOP THE NEXT GENERATION OF RETT RESEARCH, CONVENE LEADING RESEARCHERS THROUGH OUR ANNUAL SCIENCE SYMPOSIA TO ACCELERATE DISCOVERY AND COLLABORATION, AND INVEST DIRECTLY IN THE THERAPEUTIC PIPELINE TO ACCELERATE TREATMENTS THAT WILL FUNDAMENTALLY CHANGE THE LIVES OF THOSE LIVING WITH RETT SYNDROME. THROUGH OUR CLINICAL RESEARCH NETWORK AND CENTERS OF EXCELLENCE, WE DRIVE THE DEVELOPMENT OF EVIDENCE-BASED CARE GUIDELINES, CONVENE KEY OPINION LEADERS, CONTRIBUTE TO A LONGITUDINAL DATA REGISTRY, AND BUILD UPON THE RETT NATURAL HISTORY STUDY, GENERATING THE REAL-WORLD EVIDENCE THAT INFORMS BOTH CARE STANDARDS AND REGULATORY PATHWAYS FOR NEW THERAPIES. THROUGH OUR NORTH AMERICAN CLINIC NETWORK, WE PROMOTE CONSISTENT, HIGH-QUALITY CARE BY MAKING EVIDENCE-BASED CLINICAL GUIDELINES ACCESSIBLE TO FAMILIES AND THE PROVIDERS WHO SERVE THEM. 619501 0 0 IRSF STANDS ALONGSIDE FAMILIES AT EVERY STAGE OF THE RETT SYNDROME JOURNEY - FROM DIAGNOSIS THROUGH ADULTHOOD. WE BUILD AND SUPPORT THE COMMUNITY IN NUMEROUS WAYS. OUR FAMILY EMPOWERMENT TEAM DELIVERS EXPERT-LED EDUCATIONAL PROGRAMMING THROUGH WEBINARS AND REGIONAL IN-PERSON EDUCATION DAYS AND RESOURCE DEVELOPMENT, ENSURING FAMILIES HAVE ACCESS TO THE LATEST CLINICAL AND RESEARCH INSIGHTS REGARDLESS OF WHERE THEY LIVE. OUR COMMUNITY ENGAGEMENT TEAM CONNECTS FAMILIES WITH IRSF AND WITH EACH OTHER TO ENSURE THEY HAVE AROUND THE CLOCK GUIDANCE, CONNECTION, AND SUPPORT. WE DEVELOP AND DISTRIBUTE EDUCATIONAL RESOURCES TAILORED FOR FAMILIES, CAREGIVERS, EDUCATORS, AND THERAPISTS. WE ENGAGE FEDERAL POLICYMAKERS TO KEEP RETT SYNDROME A NATIONAL RESEARCH FUNDING PRIORITY AND WORK DIRECTLY WITH INDUSTRY PARTNERS TO AMPLIFY THE PATIENT VOICE IN DRUG DEVELOPMENT TO ENSURE CLINICAL TRIAL DESIGN REFLECTS THE REALITIES OF LIVING WITH RETT. 4168957 true true false false false false false false false true false false false false true true true false false false true true false false true false false true false true false false false false false false false false false false true false false false false false false false false false true 26 0 true 16 true false false false false false true true false false false false false false X 10 10 false false false false false false false true true false false false true true true true true true true true false false AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY X X BRITTNEY GIBSON 5138743020 4500 COOPER ROAD SUITE 204 CINCINNATI OH 45242 DAVID PASS PHARMD CHAIRMAN 1.0 X X 0 0 0 LESLIE MEHTA ESQ INTERIM CHIEF EXECUTIVE OFFICER - EXIT 5/25 0.5 X X 88542 0 0 MITCH BLESKE TREASURER 1.0 X X 0 0 0 STEVE WOOD VICE CHAIRMAN 0.5 X X 0 0 0 ALAN SHUKOVSKY TRUSTEE 0.5 X 0 0 0 JOSEPH HORRIGAN MD TRUSTEE 0.5 X 0 0 0 LAURA STOPPEL PHD TRUSTEE 0.5 X 0 0 0 LISA MONTEGGIA PHD TRUSTEE 0.5 X 0 0 0 MARY FORREST ENGEL TRUSTEE 0.5 X 0 0 0 PARTHY EVANS TRUSTEE 0.5 X 0 0 0 STEVE MARCONI CPA TRUSTEE 0.5 X 0 0 0 LAURA HAMEED CHIEF EXECUTIVE OFFICER - START 4/25 40.0 X 175000 0 3813 DOMINQUE PICHARD CHIEF SCIENTIFIC OFFICER 40.0 X 111802 0 36 MEGHAN CORDEIRO MARKETING & COMMUNICATION DIRECTOR 40.0 X 113218 0 4947 488562 0 8796 3 false true false 0 1142381 2680161 68080 3822542 CONFERENCE INCOME 611710 182691 182691 SERVICE REVENUE 900099 140653 140653 0 0 0 0 323344 129611 129611 0 0 567376 509291 58085 0 58085 58085 223509 1142381 291156 -67647 -67647 0 0 0 0 0 4265935 323344 0 120049 1377096 1377096 234080 234080 267354 181235 40641 45478 1008278 683491 146367 178420 21827 14796 7031 18369 12452 2747 3170 99620 67530 14899 17191 175 175 101877 101877 26441 26441 223149 154944 14510 53695 44661 31299 5707 7655 401295 310369 6095 84831 28318 20505 3541 4272 167014 140914 3804 22296 36087 23156 7969 4962 OTHER DIRECT PROGRAM COST 583215 583215 OTHER EVENTS 317976 316627 1349 BANK AND OTHER FEES 96728 1 8120 88607 MISCELLANEOUS 82222 15605 399 66218 54326 1642 52055 629 5190108 4168957 443727 577424 2178126 980594 50000 0 0 0 0 0 97701 99380 0 0 0 0 2941277 3579036 0 0 58463 48093 5325567 4707103 155482 139818 50000 68750 95562 74908 0 0 37098 23935 338142 307411 X 3780033 3092523 1207392 1307169 4987425 4399692 5325567 4707103 X -924173 333808 2632 X X false true true false X 4006260 3581751 3586302 3808219 3822542 18805074 0 0 0 0 4006260 3581751 3586302 3808219 3822542 18805074 685234 18119840 100997 74911 125135 118142 129611 548796 0 0 19643 8422 355 0 0 28420 19382290 1129253 0.93487 0.94873 X SCHEDULE A, PART II, LINE 10 OTHER INCOME DESCRIPTION - OTHER INCOME, COLUMN A - 19643.0, COLUMN B - 8422.0, COLUMN C - 355.0, COLUMN D - 0.0, COLUMN E - 0.0, COLUMN F - 28420.0; RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1183601 0 164452 0 67307 1280746 1103954 142027 62380 1183601 1030621 128447 55114 1103954 1366359 -223748 111990 1030621 1279391 168526 70000 11558 1366359 0.0 1.0 0.0 true false FEDERAL INCOME TAXES LEASE LIABILITY - OPERATING LEASE 23935 23935 X 4867090 333808 293788 627596 4239494 26441 0 26441 4265935 5454823 291156 291156 5163667 26441 0 26441 5190108 SCHEDULE D, PART V, LINE 4 INTENDED USES OF ENDOWMENT FUNDS MONEY EARNED FROM THE ENDOWMENT FUNDS WILL BE USED TO FUND OUR PROGRAM SERVICE OF RESEARCH OR FAMILY EMPOWERMENT. SCHEDULE D, PART X, LINE 2 FIN 48 (ASC 740) FOOTNOTE IRSF IS EXEMPT FROM INCOME TAXES UNDER SECTION 501 OF THE INTERNAL REVENUE CODE AND A SIMILAR PROVISION OF OHIO LAW. HOWEVER, THE IRSF IS SUBJECT TO FEDERAL INCOME TAX ON ANY UNRELATED BUSINESS TAXABLE INCOME. IRSF'S IRS FORM 990 IS SUBJECT TO REVIEW AND EXAMINATION BY FEDERAL AND STATE AUTHORITIES. IRSF BELIEVES IT HAS APPROPRIATE SUPPORT FOR ANY TAX POSITIONS TAKEN, AND THEREFORE, DOES NOT HAVE ANY UNCERTAIN INCOME TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. SCHEDULE D, PART XI, LINE 2(D) OTHER REVENUES IN AUDITED FINANCIAL STATEMENTS NOT IN FORM 990 SPECIAL EVENT EXPENSE - 291156 CHANGE IN BENEFICIAL INTEREST IN TRUST - 2632 SCHEDULE D, PART XII, LINE 2(D) OTHER EXPENSES IN AUDITED FINANCIAL STATEMENTS NOT IN FORM 990 SPECIAL EVENT EXPENSE - 291156 true EUROPE (INCLUDING ICELAND AND GREENLAND) 0 0 GRANTMAKING RESEARCH GRANTS 55930 EUROPE (INCLUDING ICELAND AND GREENLAND) 0 0 GRANTMAKING RESEARCH GRANTS 128150 NORTH AMERICA (CANADA & MEXICO ONLY) 0 0 GRANTMAKING RESEARCH GRANTS 50000 0 0 0 0 0 0 234080 0 234080 EUROPE (INCLUDING ICELAND AND GREENLAND) RESEARCH 55930 WIRE TRANSFER EUROPE (INCLUDING ICELAND AND GREENLAND) RESEARCH 128150 WIRE TRANSFER NORTH AMERICA (CANADA & MEXICO ONLY) RESEARCH 50000 WIRE TRANSFER 0 3 false false false false false false SCHEDULE F, PART I, LINE 2 PROCEDURES FOR MONITORING USE OF GRANT FUNDS OUR GRANT AWARD PROCESS INCLUDES A LETTER OF INTENT (LOI) SUBMITTED TO THE FOUNDATION. LOIS ARE REVIEWED TO DETERMINE WHETHER THE DESCRIBED PROJECT FITS THE INTENDED RESEARCH PROGRAM AND GRANT MECHANISM. APPLICANTS WITH ELIGIBLE LOIS ARE ASKED TO SUBMIT A FULL GRANT APPLICATION AND A PEER-REVIEW MEETING OF SCIENTIFIC REVIEWERS IS CONVENED TO DETERMINE WHICH PROJECTS HAVE THE HIGHEST SCIENTIFIC MERIT. RESEARCH GRANTS ARE RECOMMENDED TO THE FOUNDATION'S BOARD OF DIRECTORS WHO VOTE TO APPROVE. RESEARCHERS ARE THEN REQUIRED TO SIGN AN ACCEPTANCE AGREEMENT WITH THE FOUNDATION AND ARE REQUIRED TO SUBMIT TWO REPORTS A YEAR ON PROGRESS. THE CHIEF SCIENCE OFFICER AND MANAGER OF GRANTS & RESEARCH REVIEW THE REPORTS AND CORRESPONDS WITH THE RESEARCHER TO ENSURE PROPER USE OF FUNDS. THE FOUNDATION MAKES QUARTERLY PAYMENTS TO ALL RESEARCHERS, UNLESS THERE IS A SPECIAL EXCEPTION. SCHEDULE F, PART I, LINE 3 METHOD USED TO ACCOUNT FOR EXPENDITURES ON ORG'S FINANCIAL STATEMENTS EUROPE (INCLUDING ICELAND AND GREENLAND)-ACCRUAL; NORTH AMERICA (CANADA & MEXICO ONLY)-ACCRUAL SCHEDULE F, PART II, LINE 1 METHOD USED TO ACCOUNT FOR EXPENDITURES ON ORG'S FINANCIAL STATEMENTS EUROPE (INCLUDING ICELAND AND GREENLAND)-ACCRUAL; NORTH AMERICA (CANADA & MEXICO ONLY)-ACCRUAL RAISE A GLASS HOUSTON 148478 114852 33626 20896 26329 0 14822 FLORIDA PEREZ STROLL 140246 140246 0 199 643 850 2944 29 1077166 887283 189883 17445 76701 42220 4544 83563 1365890 1142381 223509 17445 97796 69192 5394 101329 291156 -67647 true PRESIDENT & FELLOWS OF HARVARD COLLEGE 1033 MASSACHUSETTS AVENUE 5TH FLOOR CAMBRIDGE MA 02138 042103580 501C3 150000 RESEARCH THE GENERAL HOSPITAL CORPORATION DBA MASSACHUSETTS GENERAL HOSPITAL 399 REVOLUTION DRIVE SUITE 740 SOMERVILLE MA 02145 042697983 501C3 150000 RESEARCH THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET FLOOR 5 PHILADELPHIA PA 19104 231352685 501C3 150000 RESEARCH REGENTS OF THE UNIVERSITY OF CALIFORNIA UC DAVIS SPONSORED PAYMENTS LOCKBOX PO BOX 743739 LOS ANGELES CA 90074 946036494 501C3 199998 RESEARCH THE UNIVERSITY OF TEXAS AT DALLAS 800 W CAMPBELL ROAD AD15 RICHARDSON TX 75080 751305566 501C3 146271 RESEARCH VANDERBILT UNIVERSITY 110 21ST AVENUE SOUTH NASHVILLE TN 37203 620476822 501C3 206250 RESEARCH SYRACUSE UNIVERSITY 211 LYMANN HALL SYRACUSE NY 13244 150532081 501C3 137376 RESEARCH UNIVERSITY OF VIRGINIA RECTOR & VISITORS 101 NORTH EMMET STREET CHARLOTTESVILLE VA 22903 546001796 501C3 100000 RESEARCH UNIVERSITY OF NORTH CAROLINA - CHAPEL HILL 104 AIRPORT DRIVE STE 2200 CAMPUS BOX 1350 CHAPEL HILL NC 27599 566001393 501C3 83466 RESEARCH THE GEORGE WASHINGTON UNIVERSITY 1922 F STREET NW 4TH FLOOR WASHINGTON DC DC 20052 530196584 501C3 53735 RESEARCH 10 0 SCHEDULE I, PART I, LINE 2 PROCEDURES FOR MONITORING USE OF GRANT FUNDS OUR GRANT AWARD PROCESS INCLUDES A LETTER OF INTENT (LOI) SUBMITTED TO THE FOUNDATION. LOIS ARE REVIEWED TO DETERMINE WHETHER THE DESCRIBED PROJECT FITS THE INTENDED RESEARCH PROGRAM AND GRANT MECHANISMS. APPLICANTS WITH ELIGIBLE LOIS ARE ASKED TO SUBMIT A FULL GRANT APPLICATION AND A PEER-REVIEW MEETING OF SCIENTIFIC REVIEWERS IS CONVENED TO DETERMINE WHICH PROJECTS HAVE THE HIGHEST SCIENTIFIC MERIT. RESEARCH GRANTS ARE RECOMMENDED TO THE FOUNDATION'S BOARD OF DIRECTORS WHO VOTE TO APPROVE. RESEARCHERS ARE THEN REQUIRED TO SIGN AN ACCEPTANCE AGREEMENT WITH THE FOUNDATION AND ARE REQUIRED TO SUBMIT TWO REPORTS A YEAR ON PROGRESS. THE CHIEF SCIENCE OFFICER AND MANAGER OF GRANTS & RESEARCH REVIEW THE REPORTS AND CORRESPONDS WITH THE RESEARCHER TO ENSURE PROPER USE OF FUNDS. THE FOUNDATION MAKES QUARTERLY PAYMENTS TO ALL RESEARCHERS, UNLESS THERE IS A SPECIAL EXCEPTION. X X X false false false false false false false false false LAURA HAMEED CHIEF EXECUTIVE OFFICER - START 4/25 175000 0 0 0 0 0 3813 0 0 0 178813 0 0 0 3 59113 MARKET VALUE X SPECIAL EVENTS 1 8967 MARKET VALUE 0 false true false FORM 990, PART VI, LINE 11B REVIEW OF FORM 990 BY GOVERNING BODY THE ORGANIZATION EMAILS THE 990 TO BOARD MEMBERS, ASKING FOR COMMENTS OR QUESTIONS BEFORE IT IS FILED. FORM 990, PART VI, LINE 12C CONFLICT OF INTEREST POLICY ANNUALLY, THE ENTIRE BOARD REVIEWS THE POLICY, AND A VOTE IS TAKEN. ADDITIONALLY, WHEN NEW MEMBERS ARE ELECTED, THEY RECEIVE THE POLICY AND ACKNOWLEDGE THEIR AGREEMENT. FORM 990, PART VI, LINE 15A PROCESS TO ESTABLISH COMPENSATION OF TOP MANAGEMENT OFFICIAL WE INVESTIGATED COMPENSATION OF OTHER LIKE-SIZED ORGANIZATIONS. WE ALSO BENCHMARKED AGAINST OTHER NONPROFITS ON THEIR WEBSITES. COMPENSATION IS APPROVED BY THE BOARD. FORM 990, PART VI, LINE 15B PROCESS TO ESTABLISH COMPENSATION OF OTHER EMPLOYEES WE INVESTIGATED COMPENSATION OF OTHER LIKE-SIZED ORGANIZATIONS. WE ALSO BENCHMARKED AGAINST OTHER NONPROFITS ON THEIR WEBSITES. COMPENSATION IS APPROVED BY THE BOARD. FORM 990, PART VI, LINE 19 REQUIRED DOCUMENTS AVAILABLE TO THE PUBLIC THE GOVERNING DOCUMENTS OF THE ORGANIZATION ARE AVAILABLE ON THE OHIO SECRETARY OF STATE'S WEBSITE. THE FINANCIAL STATEMENTS ARE AVAILABLE WITHIN THE ANNUAL REPORT WHICH IS AVAILABLE UPON REQUEST. THE CONFLICT OF INTEREST POLICY IS AVAILABLE UPON REQUEST. FORM 990, PART XI, LINE 9 OTHER CHANGES IN NET ASSETS OR FUND BALANCES CHANGE IN BENEFICIAL INTEREST IN TRUST - 2632; TOTAL - 2632; FORM 990, PART XII, LINE 2C CHANGE OF OVERSIGHT PROCESS OR SELECTION PROCESS THERE WERE NO CHANGES TO THE PROCESS IN THE CURRENT YEAR.