2025-10-28T08:32:04-05:00 2025-06-30 881478669 CBIZ ADVISORS LLC 68 SOUTH SERVICE ROAD SUITE 300 MELVILLE NY 117472354 990 2024-07-01 521265361 THE MARFAN FOUNDATION INC MARF 5168838712 22 MANHASSET AVENUE PORT WASHINGTON NY 110502023 MICHAEL L WEAMER PRESIDENT AND CEO 5168838712 2025-10-27 1 1 MARY ANN MENDEL P00551302 6314144000 2025-10-27 2024 2025-03-06 01:10:19Z MICHAEL L WEAMER 22 MANHASSET AVENUE PORT WASHINGTON NY 110502023 12512714 0 X WWW.MARFAN.ORG X 1981 MD SEE SCHEDULE O.THE MARFAN FOUNDATION DRIVES RESEARCH, EDUCATION AND SUPPORT AND BUILDS COMMUNITY TO IMPROVE OUTCOMES, SAVE LIVES AND EMPOWER ALL PEOPLE TO THRIVE WHO ARE LIVING WITH MARFAN, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS SYNDROMES, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. *WE PURSUE THE MOST INNOVATIVE RESEARCH AND MAKE SURE THAT IT RECEIVES PROPER FUNDING. *WE FOSTER AN INFORMED PUBLIC AND EDUCATED PATIENT COMMUNITY TO INCREASE EARLY DIAGNOSIS AND ENSURE LIFE-SAVING TREATMENT. *WE PROVIDE DEDICATED SUPPORT TO FAMILIES, CAREGIVERS, AND HEALTHCARE PROVIDERS. 24 24 30 510 0 0 4878044 6904067 131150 34390 476826 842235 0 0 5486020 7780692 1172413 1529718 0 0 3721663 4262612 0 0 825711 1752700 1773674 6646776 7566004 -1160756 214688 18118070 19547558 1860516 2672468 16257554 16875090 X SEE SCHEDULE O.THE MARFAN FOUNDATION DRIVES RESEARCH, EDUCATION AND SUPPORT AND BUILDS COMMUNITY TO IMPROVE OUTCOMES, SAVE LIVES AND EMPOWER ALL PEOPLE TO THRIVE WHO ARE LIVING WITH MARFAN, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS SYNDROMES, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. *WE PURSUE THE MOST INNOVATIVE RESEARCH AND MAKE SURE THAT IT RECEIVES PROPER FUNDING. *WE FOSTER AN INFORMED PUBLIC AND EDUCATED PATIENT COMMUNITY TO INCREASE EARLY DIAGNOSIS AND ENSURE LIFE-SAVING TREATMENT. *WE PROVIDE DEDICATED SUPPORT TO FAMILIES, CAREGIVERS, AND HEALTHCARE PROVIDERS. 0 0 2811733 1512774 SEE SCHEDULE O.RESEARCH -EXPENSES $2,811,733, GRANTS $1,512,774, REVENUE $0THE MARFAN FOUNDATION ADVANCES RESEARCH THAT SAVES LIVES AND DRAMATICALLY ENHANCES THE QUALITY OF LIFE FOR PEOPLE LIVING WITH MARFAN SYNDROME, LOEYS-DIETZ SYNDROME, VEDS, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. OUR RESEARCH PROGRAM HAS ADVANCED SCIENCE SINCE 1981, FUNDING 176 RESEARCH GRANTS SINCE 1986. THE RESEARCH WE'VE SUPPORTED HAS HELPED REDUCE LIFE-THREATENING PROBLEMS, IDENTIFIED TREATMENTS THAT HAVE IMPROVED QUALITY OF LIFE, AND HELPED PEOPLE LIVE LONGER LIVES. THE MARFAN FOUNDATION COLLABORATES WITH THE RESEARCH COMMUNITY AND ORGANIZATIONS TO IDENTIFY NEW THERAPIES AND TREATMENTS DOMESTICALLY AND AROUND THE GLOBE. THE FOUNDATION'S TWO-YEAR AND FOUR-YEAR GRANTS MECHANISMS HELP ENSURE A PIPELINE OF DEDICATED FELLOWS, NEW INVESTIGATORS, AND FACULTY MEMBERS WHO ARE COMMITTED TO THE SCIENTIFIC DISCOVERY NECESSARY TO ADVANCE UNDERSTANDING OF RARE DISEASES. THE FOUNDATION CONVENES NATIONAL AND INTERNATIONAL RESEARCH CONFERENCES, FACILITATES COLLABORATIONS AMONG RESEARCHERS AND RESEARCH INSTITUTIONS, AND HOLDS SYMPOSIUMS IN THE US AND ABROAD TO FACILITATE THE SHARING OF RESEARCH FINDINGS THAT EXPEDITE PROGRESS. THE MARFAN FOUNDATION PARTNERS WITH GOVERNMENT AGENCIES AND OTHER HEALTHCARE ORGANIZATIONS TO ADVANCE ITS RESEARCH GOALS AND ADVOCATE FOR ADDITIONAL RESEARCH FUNDING FROM THE GOVERNMENT. 2092564 12297 32885 SEE SCHEDULE O.SUPPORT -EXPENSES $2,092,564, GRANTS $12,297, REVENUE $32,885THE MARFAN FOUNDATION OFFERS CUTTING-EDGE FACT-BASED INFORMATION ABOUT MARFAN, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND OTHER GENETIC AORTIC AND VASCULAR CONDITIONS. WE REACH A WORLDWIDE AUDIENCE DIGITALLY AND THROUGH IN-PERSON PROGRAMMING. THROUGH OUR INSTITUTIONAL DIRECTORY, THE MARFAN FOUNDATION CONNECTS THOUSANDS OF INDIVIDUALS AND FAMILIES TO MORE THAN 70 U.S. - AND A GROWING NUMBER OF GLOBAL - INSTITUTIONS OFFERING EXPERTISE IN MARFAN, LDS, VEDS, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. WE PROVIDE EXPANSIVE INFORMATION FOR PATIENTS, FAMILY MEMBERS, AND HEALTHCARE PROVIDERS THROUGH OUR WEBSITE AND HELPLINE, ACCESSIBLE VIA PHONE AND EMAIL, AS WELL AS WEBINARS ON MEDICAL TOPICS, MENTAL HEALTH ISSUES, SUPPORT GROUPS, AND QUALITY OF LIFE. PROGRAMS ARE SCHEDULED AT VARIOUS TIMES TO INCREASE ACCESS ACROSS TIME ZONES (US AND ABROAD). AN INCREASING NUMBER OF RESOURCES AND EDUCATIONAL OPPORTUNITIES ARE OFFERED IN SPANISH LANGUAGE AND OTHER LANGUAGES TO BETTER SERVE PEOPLE LIVING WITH GENETIC AORTIC CONDITIONS AND THEIR SUPPORT NETWORKS. THE FOUNDATION IS FOCUSED ON ENSURING EVERYONE HAS ACCESS TO QUALITY CARE AND FOSTERING BELONGING FOR ALL. 1380263 4647 1505 SEE SCHEDULE O.EDUCATION - EXPENSES $1,380,263, GRANTS $4,647, REVENUE $1,505THE MARFAN FOUNDATION AND ITS DIVISIONS (THE LOEYS-DIETZ SYNDROME FOUNDATION, THE VEDS MOVEMENT, AND THE GENETIC AORTIC NETWORK) ARE THE PREEMINENT PROVIDERS OF INFORMATION AND PROGRAMS FOR PEOPLE LIVING WITH GENETIC AORTIC AND VASCULAR CONDITIONS, THEIR LOVED ONES, MEDICAL PROFESSIONALS, RESEARCHERS, AND THE GENERAL PUBLIC. WE REACH ONE MILLION PEOPLE ANNUALLY WITH OUR EDUCATIONAL RESOURCES, AND MORE THAN 7 MILLION IN THE SOCIAL MEDIA SPACE ALONE. THE MARFAN FOUNDATION OFFERS A WEALTH OF MEDICAL AND QUALITY-OF-LIFE INFORMATION IN MANY LANGUAGES THROUGH ITS HELP & RESOURCE CENTER, WHICH REACHES 5,000 PEOPLE EVERY YEAR -- DIRECTED BY IN-HOUSE NURSES AND A BILINGUAL MANAGER WHO ANSWER QUESTIONS BY PHONE AND EMAIL, AND THROUGH ITS COMPREHENSIVE WEBSITE, WHICH IS AVAILABLE IN MORE THAN 25 LANGUAGES. THE FOUNDATION OFFERS SPECIALIZED RESOURCES FOR CHILDREN, TEENS, PARENTS, TEACHERS, AND SCHOOL NURSES. IN ADDITION, THE FOUNDATION IS FOCUSED ON MENTAL HEALTH, OFFERING A RANGE OF OPPORTUNITIES, INCLUDING VIRTUAL SUPPORT GROUPS, VIDEOS, WEBINARS, AND OTHER CONTENT. THE MARFAN FOUNDATION FOCUSES ON EXPANDING HEALTH EQUITY AND ACCESS TO CARE FOR THE CONSTITUENTS WE SERVE GLOBALLY. 6284560 1 1 0 1 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 39 0 1 30 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 24 24 1 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AR CA FL GA HI IL KS KY MD MA MI MN MS NH NJ NM NY NC ND OR PA RI SC TN VA WV WI X X INDERJEET KAUR 5168838712 22 MANHASSET AVENUE PORT WASHINGTON NY 11050 BERT MEDINA CHAIR 8.00 X X 0 0 0 CORY A EAVES IMMEDIATE PAST CHAIR 1.00 X X 0 0 0 CARYN E KAUFFMAN CPA TREASURER 3.00 X X 0 0 0 PATRICIA MCCABE ESTRADA SECRETARY 1.00 X X 0 0 0 SCOTT D AVITABILE ESQ DIRECTOR 1.00 X 0 0 0 GIL BASHE DIRECTOR 1.00 X 0 0 0 JUAN BOWEN MD DIRECTOR 1.00 X 0 0 0 ALAN BRAVERMAN MD DIRECTOR 1.00 X 0 0 0 DUKE CAMERON MD DIRECTOR 1.00 X 0 0 0 RAY CHEVALLIER DIRECTOR 1.00 X 0 0 0 BRANDY BANKS HOTCHKISS DIRECTOR 1.00 X 0 0 0 GARY KAUFFMAN DIRECTOR 1.00 X 0 0 0 JERRY L LERMAN DIRECTOR 1.00 X 0 0 0 JEFFREY C LESAGE DIRECTOR 1.00 X 0 0 0 SINCLAIR LI DIRECTOR 1.00 X 0 0 0 BRYAN MAHER DIRECTOR 1.00 X 0 0 0 JESS MILBURN DIRECTOR 1.00 X 0 0 0 JAMES PRUTOW DIRECTOR 1.00 X 0 0 0 JOAQUIN RAMOS JR DIRECTOR 1.00 X 0 0 0 DAWN REINER DIRECTOR 1.00 X 0 0 0 ANDREW TOY DIRECTOR 1.00 X 0 0 0 JON R TULLIS DIRECTOR 1.00 X 0 0 0 DAVID WARREN DIRECTOR 1.00 X 0 0 0 ANTHONY YASICK MD DIRECTOR 1.00 X 0 0 0 MICHAEL L WEAMER PRES/CEO 35.00 X 474635 0 28106 INDERJEET KAUR CPA CHIEF FINANCIAL OFFICER 35.00 X 168021 0 18163 JUDITH GIBALDI CHIEF OPERATIONS OFFICER 35.00 X 125230 0 28106 HELAINE BARUCH CHIEF DEVELOPMENT OFFICER 35.00 X 250145 0 18163 JOSEPHINE GRIMA CHIEF SCIENCE OFFICER 35.00 X 210325 0 18163 EILEEN NOVINS CHIEF PROGRAM OFFICER 35.00 X 194453 0 18163 KIMBERLY K HUDDLESTON VP. OF DEVELOPMENT 35.00 X 138012 0 326 LAUREN E MAY DIRECTOR OF RESEARCH 35.00 X 131724 0 326 1692545 0 129516 8 0 1 0 42ND STREET LESSEE LLC DBA CIPRIANI 110 EAST 42ND STREET NEW YORK NY 10017 EVENT PACKAGE FOR VENUE, AND CATERING 125000 1 3311124 3592943 41013 6904067 OTHER CONFERENCES 541700 34390 34390 34390 525079 525079 3871091 3553935 317156 317156 317156 1178087 3311124 1178087 0 7780692 34390 0 842235 1051200 1051200 7650 7650 470868 470868 891234 711239 153546 26449 2759368 2255780 136012 367576 376189 299136 37981 39072 235821 190927 18387 26507 41354 41354 14538 14290 124 124 200087 198244 1717 126 156121 131763 222 24136 284198 181453 25603 77142 210309 168248 7552 34509 51316 34364 8496 8456 414883 251674 2541 160668 249322 248470 852 37190 22314 7438 7438 9720 5832 1944 1944 MISC/EVENT DECOR/STAFF 78561 23048 10601 44912 DUES AND SUBSCRIPTIONS 20357 12342 2215 5800 FEES AND PERMITS 5718 5718 7566004 6284560 455733 825711 2029585 2760327 2096801 1799211 16549 33842 204159 497707 1576916 1033108 556480 543808 11853616 12440501 260077 303144 1100803 1169018 18118070 19547558 544203 760812 970000 1460000 86236 148512 260077 303144 1860516 2672468 X 8150927 9945445 8106627 6929645 16257554 16875090 18118070 19547558 X 214688 240493 162355 X X 0 1 X 1 0 X 4543195 9568552 7626928 4843044 6879067 33460786 4543195 9568552 7626928 4843044 6879067 33460786 6406707 27054079 85176 205040 317063 431623 525079 1563981 35024767 232191 0.77240 0.79180 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 7566004 7566004 528300 132075 0 0 385264 487925 482339 528300 1883828 2825742 15000 15000 96316 121981 120585 132075 470957 706436 15000 15000 1704206 185325 520845 1368686 1629161 237314 162269 1704206 1585912 157111 113862 1629161 1548015 37897 1585912 1128897 400000 220263 201145 1548015 1.00000 0.00000 0.00000 0 0 107927 107927 917564 516480 401084 551425 516628 34797 543808 BENEFICIAL INTEREST IN CHARITABLE REMAINDER TRUST 1169018 1169018 OTHER PAYABLES 303144 303144 X 8280146 240493 205283 68216 513992 7766154 14538 14538 7780692 7662610 205283 25000 230283 7432327 14538 119139 133677 7566004 PART V, LINE 4: RESERVE FUND - TO PROVIDE AN EMERGENCY FUND EQUAL TO 50% OF THE PROGRAM AND OPERATIONS BUDGET IN ORDER TO SAFEGUARD ORGANIZATION IN THE EVENT OF ECONOMIC DIFFICULTIES. PART X, LINE 2: THE FOUNDATION RECOGNIZES AND MEASURES ITS UNRECOGNIZED TAX POSITIONS AND ASSESSES THE LIKELIHOOD, BASED ON THEIR TECHNICAL MERIT, THAT TAX POSITIONS WILL BE SUSTAINED UPON EXAMINATION BASED ON THE FACTS, CIRCUMSTANCES, AND INFORMATION AVAILABLE AT THE END OF EACH PERIOD. THE MEASUREMENT OF UNRECOGNIZED TAX POSITIONS IS ADJUSTED WHEN NEW INFORMATION IS AVAILABLE, OR WHEN AN EVENT OCCURS THAT REQUIRES A CHANGE. INTEREST AND PENALTIES ASSOCIATED WITH UNRECOGNIZED TAX POSITIONS, IF ANY, WOULD BE CLASSIFIED AS INTEREST EXPENSE AND ADDITIONAL INCOME TAXES, RESPECTIVELY, IN THE STATEMENTS OF ACTIVITIES. THE FOUNDATION DID NOT IDENTIFY ANY UNCERTAIN TAX POSITIONS FOR THE YEARS ENDED JUNE 30, 2025 AND 2024. THE FOUNDATION IS SUBJECT TO ROUTINE AUDITS BY TAXING JURISDICTIONS; HOWEVER, THERE ARE CURRENTLY NO AUDITS FOR ANY PERIODS PENDING OR IN PROGRESS. PART XI, LINE 2D - OTHER ADJUSTMENTS: CHANGE IN VALUE OF CHARITABLE REMAINDER TRUST 68,215. ROUNDING 1. PART XII, LINE 2D - OTHER ADJUSTMENTS: UNCOLLECTIBLE EXPENSE 25,000. PART XII, LINE 4B - OTHER ADJUSTMENTS: AWARD REFUNDS 119,139. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANT TO RECIPIENT RESEARCH 470868 0 0 0 0 0 0 470868 0 470868 EUROPE RESEARCH 220000 CHECK 0 FMV EUROPE RESEARCH 220000 CHECK 0 FMV EUROPE RESEARCH 30868 CHECK 0 FMV 3 0 0 0 0 0 0 0 PART I, LINE 2: THE GRANT RECIPIENTS MUST SUBMIT INTERMEDIATE AND FINAL PROGRESS REPORTS AND FINANCIAL REPORTS. 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X X X X 0 0 0 0 0 0 0 0 0 MICHAEL L WEAMER PRES/CEO 474635 0 0 0 0 0 10000 0 18106 0 502741 0 0 0 HELAINE BARUCH CHIEF DEVELOPMENT OFFICER 250145 0 0 0 0 0 0 0 18163 0 268308 0 0 0 JOSEPHINE GRIMA CHIEF SCIENCE OFFICER 210325 0 0 0 0 0 0 0 18163 0 228488 0 0 0 EILEEN NOVINS CHIEF PROGRAM OFFICER 194453 0 0 0 0 0 0 0 18163 0 212616 0 0 0 INDERJEET KAUR CPA CHIEF FINANCIAL OFFICER 168021 0 0 0 0 0 0 0 18163 0 186184 0 0 0 JUDITH GIBALDI CHIEF OPERATIONS OFFICER 125230 0 0 0 0 0 10000 0 18106 0 153336 0 0 0 PART I, LINE 3 WE RELY ON THE WRITTEN COMPENSATION SURVEYS PUBLISHED BY PRM CONSULTING GROUP WHICH PROVIDES A MANAGEMENT COMPENSATION REPORT FOR NOT-FOR-PROFIT ORGANIZATIONS. WE REVIEW THIS REPORT ANNUALLY TO STAY INFORMED REGARDING COMPENSATION TRENDS. X 11 41013 FMV - NYSE 0 0 1 1 PART I, LINE 32B: THE FOUNDATION USES THE SERVICES OF AN INVESTMENT FIRM TO SELL DONATED SECURITIES. FORM 990, PART VI, SECTION A, LINE 2 CARYN KAUFFMAN, CPA TREASURER, HAS FAMILY RELATIONSHIP WITH GARY KAUFFMAN, DIRECTOR. FORM 990, PART VI, SECTION B, LINE 11B THE 990 IS REVIEWED BY THE CEO, CFO AND THE AUDIT COMMITTEE. ONCE THE AUDIT COMMITTEE APPROVES THE 990, IT IS THEN PRESENTED TO THE BOARD FOR REVIEW BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C ALL OFFICERS, DIRECTORS AND KEY EMPLOYEES ARE REQUIRED TO COMPLETE A CONFLICT OF INTEREST FORM ANNUALLY WHICH INCLUDES DISCLOSURE OF POSSIBLE CONFLICTS OF INTEREST. THESE DOCUMENTS ARE MAINTAINED AT THE ORGANIZATION'S HEADQUARTERS. ANY POTENTIAL CONFLICTS OF INTEREST ARE DISCLOSED TO THE BOARD. OFFICERS AND DIRECTORS ARE REQUIRED TO ABSTAIN FROM ANY VOTE WHICH HAS A POTENTIAL CONFLICT OF INTEREST. FORM 990, PART VI, SECTION B, LINE 15 THE EXECUTIVE COMMITTEE CONDUCTS AN ANNUAL PERFORMANCE REVIEW OF THE PRESIDENT/CEO WHICH INCLUDES DIRECT FEEDBACK FROM MEMBERS OF THE BOARD. AN EXECUTIVE SESSION IS CONDUCTED AS PART OF THE REVIEW AND AN EXECUTIVE SESSION IS ALSO CONDUCTED WITH THE BOARD REPORTING THE RESULTS AND ANY CHANGE IN COMPENSATION CONSIDERATION. COMPENSATION SURVEYS ARE ALSO REFERENCED IN DETERMINING SALARIES. IN ADDITION, THE FOUNDATION CONDUCTS AN ANNUAL PERFORMANCE REVIEW FOR ALL OF ITS OFFICERS, AND ALL OTHER EMPLOYEES. THE ANNUAL PERFORMANCE REVIEW INCLUDES FEEDBACK FROM THE CEO, DISCUSSES ANY ACCOMPLISHMENTS DURING THE YEAR AND INCLUDES RECOMMENDATIONS FOR IMPROVEMENTS AS NEEDED. COMPENSATION CHANGES ARE BASED ON PERFORMANCE AND NONPROFIT COMPENSATION SURVEYS. FORM 990, PART VI, SECTION C, LINE 19 THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND AUDITED FINANCIAL STATEMENTS ARE ALL AVAILABLE UPON REQUEST. IN ADDITION, THE AUDITED FINANCIAL STATEMENTS AND THE FORM 990 ARE AVAILABLE TO THE PUBLIC ON THE ORGANIZATION'S WEBSITE, WWW.MARFAN.ORG. FORM 990, PART XI, LINE 9: RESEARCH GRANT REFUNDS 119,139. CHANGE IN VALUE OF CHARITABLE REMAINDER TRUST 68,215. UNCOLLECTIBLE EXPENSE -25,000. ROUNDING 1. FORM 990, PART XII, LINE 2C, CHANGE IN OVERSIGHT PROCESS NO CHANGE IN PROCESS FROM THE PRIOR YEAR.