2024-10-24T13:48:22-05:00 2024-06-30 111986323 MARCUM LLP 10 MELVILLE PARK ROAD MELVILLE NY 117473146 990 2023-07-01 521265361 THE MARFAN FOUNDATION INC MARF 5168838712 22 MANHASSET AVENUE PORT WASHINGTON NY 110502023 MICHAEL L WEAMER PRESIDENT AND CEO 5168838712 2024-10-23 1 0 MARY ANN MENDEL P00551302 6314144000 2024-10-23 2023 2024-10-15 13:58:12Z MICHAEL L WEAMER 22 MANHASSET AVENUE PORT WASHINGTON NY 110502023 9540484 0 X WWW.MARFAN.ORG X 1981 MD SEE SCHEDULE O.THE MARFAN FOUNDATION SAVES LIVES AND IMPROVES THE QUALITY OF LIFE OF INDIVIDUALS WITH GENETIC AORTIC AND VASCULAR CONDITIONS INCLUDING MARFAN, LOEYS-DIETZ, AND VASCULAR EHLERS-DANLOS SYNDROMES. 21 21 28 500 0 0 7656928 4878044 225206 131150 313246 476826 0 0 8195380 5486020 1115927 1172413 0 0 3415406 3721663 0 0 732597 2227164 1752700 6758497 6646776 1436883 -1160756 18561612 18118070 1718116 1860516 16843496 16257554 X SEE SCHEDULE O.THE MARFAN FOUNDATION SAVES LIVES AND IMPROVES THE QUALITY OF LIFE OF INDIVIDUALS WITH GENETIC AORTIC AND VASCULAR CONDITIONS, INCLUDING MARFAN, LOEYS-DIETZ, AND VASCULAR EHLERS-DANLOS (VEDS) SYNDROMES WHILE CREATING COMMUNITY. 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 2248000 1090810 0 SEE SCHEDULE O.RESEARCH -EXPENSES $2,248,000, GRANTS $1,090,810, 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 WITH MARFAN SYNDROME AND RELATED CONDITIONS. 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 GRANT 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. 2059592 76323 131140 SEE SCHEDULE O.SUPPORT -EXPENSES $2,059,592, GRANTS $76,323, REVENUE $131,140THE MARFAN FOUNDATION ALWAYS HAS THE LATEST AND MOST ACCURATE INFORMATION ABOUT MARFAN, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND OTHER GENETIC AORTIC AND VASCULAR CONDITIONS, AND IT REACHES A WORLDWIDE AUDIENCE DIGITALLY AND THROUGH IN-PERSON PROGRAMMING. THE MARFAN FOUNDATION CONNECTS THOUSANDS OF INDIVIDUALS AND FAMILIES TO MORE THAN 70 U.S. AND A GROWING NUMBER OF GLOBAL INSTITUTIONS OFFERING EXPERIENCE AND 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 AND OTHER LANGUAGES TO BETTER SERVE AFFECTED PEOPLE AND THEIR SUPPORT NETWORKS. THE FOUNDATION IS FOCUSED ON REACHING MORE PEOPLE IN MARGINALIZED COMMUNITIES, INCREASING HEALTH EQUITY, AND FOSTERING ADDITIONAL ACCESS TO CARE. 1140112 5280 10 SEE SCHEDULE O.EDUCATION - EXPENSES $1,140,112, GRANTS $5,280, REVENUE $10THE MARFAN FOUNDATION AND ITS DIVISIONS (THE LOEYS-DIETZ SYNDROME FOUNDATION, THE VEDS MOVEMENT, AND THE GENTAC ALLIANCE) ARE THE PREEMINENT PROVIDERS OF INFORMATION AND PROGRAMS FOR AFFECTED INDIVIDUALS AND FAMILIES WITH GENETIC AORTIC AND VASCULAR CONDITIONS, MEDICAL PROFESSIONALS, RESEARCHERS, AND THE GENERAL PUBLIC. WE REACH ONE MILLION PEOPLE ANNUALLY WITH OUR EDUCATIONAL RESOURCES. THE MARFAN FOUNDATION OFFERS A WEALTH OF MEDICAL AND QUALITY-OF-LIFE INFORMATION FOR PEOPLE LIVING WITH MARFAN SYNDROME, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND RELATED CONDITIONS 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 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. 5447704 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 27 0 1 28 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 21 21 1 0 1 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 MO NV NH NJ NM NY NC ND OR PA RI SC TN VA WV WI AK CO CT DC LA ME OH OK 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 JERRY L LERMAN DIRECTOR 1.00 X 0 0 0 ALAN BRAVERMAN MD DIRECTOR 1.00 X 0 0 0 BRANDY BANKS HOTCHKISS DIRECTOR 1.00 X 0 0 0 GIL BASHE DIRECTOR 1.00 X 0 0 0 JOAQUIN RAMOS JR 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 DAVID WARREN DIRECTOR 1.00 X 0 0 0 ANDREW TOY DIRECTOR 1.00 X 0 0 0 GARY KAUFFMAN DIRECTOR 1.00 X 0 0 0 JON TULLIS DIRECTOR 1.00 X 0 0 0 SCOTT D AVITABILE ESQ DIRECTOR 1.00 X 0 0 0 ANTHONY YASICK MD DIRECTOR 1.00 X 0 0 0 JUAN BOWEN MD DIRECTOR 1.00 X 0 0 0 RAY CHEVALLIER DIRECTOR 1.00 X 0 0 0 JAMES PRUTOW DIRECTOR 1.00 X 0 0 0 DAWN REINER DIRECTOR 1.00 X 0 0 0 MICHAEL L WEAMER PRES/CEO 35.00 X 457343 0 27314 INDERJEET KAUR CPA CHIEF FINANCIAL OFFICER 35.00 X 154779 0 17371 JUDITH GIBALDI CHIEF OPERATIONS OFFICER 35.00 X 118377 0 27314 HELAINE BARUCH CHIEF DEVELOPMENT OFFICER 35.00 X 243822 0 17371 JOSEPHINE GRIMA CHIEF SCIENCE OFFICER 35.00 X 207595 0 17371 EILEEN NOVINS CHIEF GLOBAL BUSINESS DEVEL. OFFICER 35.00 X 189021 0 17371 LAUREN E MAY DIRECTOR OF RESEARCH 35.00 X 131937 0 17371 KIMBERLY K HUDDLESTON VP. OF DEVELOPMENT 35.00 X 117954 0 17371 1620828 0 158854 8 0 1 0 0 2905528 1972516 33591 4878044 MARFAN CONFERENCE 541700 116428 116428 OTHER CONFERENCES 541700 14722 14722 131150 431623 431623 3161822 3116619 45203 45203 45203 937845 2905528 937845 0 5486020 131150 0 476826 681370 681370 71043 71043 420000 420000 832290 655587 151756 24947 2384033 1906509 161159 316365 292759 226448 35658 30653 212581 167867 21245 23469 38951 38951 15000 15000 12093 11883 105 105 111790 110208 1551 31 86957 66742 139 20076 257328 169674 19984 67670 226159 185701 7420 33038 54601 37295 8653 8653 413289 266532 2160 144597 387343 377180 10163 49955 29973 9991 9991 9625 5775 1925 1925 MISC/EVENT DECOR/STAFF 64755 29850 0 34905 DUES AND SUBSCRIPTIONS 21111 9324 5778 6009 FEES AND PERMITS 3743 3743 6646776 5447704 466475 732597 826752 2029585 3194059 2096801 203386 16549 184515 204159 1552400 995920 606435 556480 12270093 11853616 219091 260077 1057281 1100803 18561612 18118070 482564 544203 800000 970000 216461 86236 219091 260077 1718116 1860516 X 7373915 8150927 9469581 8106627 16843496 16257554 18561612 18118070 X -1160756 531209 43605 X X 0 1 X 1 0 X 3428052 4543195 9568552 7626928 4843044 30009771 3428052 4543195 9568552 7626928 4843044 30009771 5325043 24684728 126789 85176 205040 317063 431623 1165691 31175462 209234 0.79180 0.79590 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 15000 15000 6631776 6646776 482339 120585 0 0 394558 385264 487925 482339 1750086 2625129 17600 0 0 15000 32600 98640 96316 121981 120585 437522 656283 17600 0 0 15000 32600 1629161 237314 162269 1704206 1585912 157111 113862 1629161 1548015 37897 1585912 1128897 400000 220263 201145 1548015 1411412 117485 400000 1128897 1.00000 0.00000 0.00000 0 0 107927 107927 917564 492908 424656 526909 503012 23897 556480 BENEFICIAL INTEREST IN CHARITABLE REMAINDER TRUST 1100803 1100803 OTHER PAYABLES 260077 260077 X 6115469 531209 66811 43522 641542 5473927 12093 12093 5486020 6701411 66811 35000 101811 6599600 12093 35083 47176 6646776 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: MANAGEMENT HAS EVALUATED THE FOUNDATION'S TAX POSITIONS AND CONCLUDED THAT THE FOUNDATION HAS NOT TAKEN ANY UNCERTAIN TAX POSITIONS THAT REQUIRE ADJUSTMENT TO THE FINANCIAL STATEMENTS TO COMPLY WITH THE PROVISIONS OF FINANCIAL ACCOUNTING STANDARDS BOARD (FASB) ACCOUNTING STANDARDS CODIFICATION (ASC) NO. 740. PART XI, LINE 2D - OTHER ADJUSTMENTS: CHANGE IN VALUE OF CHARITABLE REMAINDER TRUST 43,522. PART XII, LINE 2D - OTHER ADJUSTMENTS: UNCOLLECTIBLE EXPENSE 35,000. PART XII, LINE 4B - OTHER ADJUSTMENTS: AWARD REFUNDS 35,083. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANT TO RECIPIENT RESEARCH 420000 0 0 0 0 0 0 420000 0 420000 EUROPE RESEARCH 220000 CHECK 0 FMV EUROPE RESEARCH 200000 CHECK 0 FMV 2 0 0 0 0 0 0 0 PART I, LINE 2: THE GRANT RECIPIENTS MUST SUBMIT INTERMEDIATE AND FINAL PROGRESS REPORTS AND FINANCIAL REPORTS. NYC GALA 968562 683472 285090 39240 97159 33620 115070 HEARTWORKS-HOUSTON 498605 387037 111568 52653 19332 39583 29 2376206 1835019 541187 89989 243444 44036 163719 3843373 2905528 937845 129229 393256 96988 318372 937845 0 1 JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE 1101 EAST 33RD STREET BALTIMORE MD 21218 520595110 501C3 250400 0 RESEARCH BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA BCM 390 HOUSTON TX 77030 741613878 501C3 84222 0 RESEARCH THE ARNOLD P GOLD FOUNDATION 619 EAST PALISADE AVE ENGLEWOOD CLIFFS NJ 07632 223052098 501C3 100900 0 RESEARCH MAYO CLINIC ROCHESTER 200 FIRST STREET SW ROCHESTER MN 55902 416011702 501C3 15000 0 RESEARCH WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY 575 LEXINGTON AVENUE NEW YORK NY 10022 131623978 501C3 18900 0 RESEARCH HOSPTIAL FOR SPECIAL SURGERY 535 EAST 70TH STREET NEW YORK NY 10021 131624135 501C3 100000 0 RESEARCH NYU GROSSMAN SCHOOL OF MEDICINE 550 1ST AVE NEW YORK NY 100166402 135562309 501C3 100000 0 RESEARCH AMERICAN SOCIETY FOR MATRIX BIOLOGY 1801 ROCKVILLE PIKESTE 350 ROCKVILLE MD 208521641 912055099 501C3 5938 0 RESEARCH 8 0 CONFERENCE AWARD - HOTEL 82 46920 CONFERENCE AWARD - TRAVEL 6 5085 CAMP AWARD - TRAVEL 2 2138 CAMP AWARD 64 16900 PART I, LINE 2: THE GRANT RECIPIENTS MUST SUBMIT INTERMEDIATE AND FINAL PROGRESS REPORTS AND FINANCIAL REPORTS. X X X X 0 0 0 0 0 0 0 0 0 MICHAEL L WEAMER PRES/CEO 457343 0 0 0 0 0 10000 0 17314 0 484657 0 0 0 HELAINE BARUCH CHIEF DEVELOPMENT OFFICER 243822 0 0 0 0 0 0 0 17371 0 261193 0 0 0 JOSEPHINE GRIMA CHIEF SCIENCE OFFICER 207595 0 0 0 0 0 0 0 17371 0 224966 0 0 0 EILEEN NOVINS CHIEF GLOBAL BUSINESS DEVEL. OFFICER 189021 0 0 0 0 0 0 0 17371 0 206392 0 0 0 INDERJEET KAUR CPA CHIEF FINANCIAL OFFICER 154779 0 0 0 0 0 0 0 17371 0 172150 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 9 33591 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 A, LINE 4 THE BY-LAWS WERE AMENDED TO UPDATE THE CURRENT MISSION, TERM LIMITS, CHAIR AND OFFICER POSITIONS, AND NON-GOVERNMENTAL STANDING COMMITTEES. 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: AWARD REFUNDS 35,083. CHANGE IN VALUE OF CHARITABLE REMAINDER TRUST 43,522. UNCOLLECTIBLE EXPENSE -35,000. FORM 990, PART XII, LINE 2C, CHANGE IN OVERSIGHT PROCESS NO CHANGE FROM THE PRIOR YEAR.