2025-11-12T08:09:55-06:00 2024-12-31 270710060 CANTOR NOVAK BEAVER & PIKE PC 630 ROUTE 70 WEST CHERRY HILL NJ 08002 990 2024-01-01 822469441 THE MED13L FOUNDATION INC MED1 8565345470 17 TIMBER DRIVE BARRINGTON NJ 08007 KATHLEEN BARRY BOYCHUCK CHAIR 8477207905 2025-11-10 1 1 DANIEL D PIKE CPA P00776654 8562819010 2024 2025-03-06 01:10:19Z KATHLEEN BARRY BOYCHUCK 17 TIMBER DRIVE BARRINGTON NJ 08007 197437 0 X WWW.MED13L.ORG X 2017 NJ THE MISSION OF THE CORPORATION IS TO: (A) INCREASE AWARENESS WITHIN LOCAL, NATIONAL AND INTERNATIONAL COMMUNITIES ABOUT MED 13L AND PROVIDE ACCURATE INFORMATION TO PATIENTS, FAMILIES, AND MEDICAL PROFESSIONALS; (B) RAISE AND PROVIDE CRUCIAL FUNDING FOR RESEARCH, DEVELOPMENT, AND ADVANCEMENTS IN UNDERSTANDING MED13L; (C) DEEPEN THE UNDERSTANDING OF THE UNDERLYING CAUSES OFMEDL3L AND DISCOVER EFFECTIVE TREATMENTS AND CURE, INCLUDING BY COLLABORATING WITH SCIENTISTS, RESEARCHERS, AND MEDICAL INSTITUTIONS TO SUPPORT STUDIES AIMED AT UNDERSTANDING MED13L BETTER, IDENTIFYING POTENTIAL TREATMENTS, AND IMPROVING THE QUALITY OF LIFE FOR AFFECTED INDIVIDUALS; ( D) DEVELOP EDUCATIONAL MATERIALS, HOST AWARENESS CAMPAIGNS, AND ORGANIZE WORKSHOPS OR CONFERENCES TO DISSEMINATE KNOWLEDGE ABOUT MED13L; (E) CREATE A SUPPORT NETWORK FOR INDIVIDUALS AND FAMILIES AFFECTED BY MEDL3L; 5 5 0 10 0 0 602092 170834 0 0 15732 26603 -8884 -9222 608940 188215 163258 292840 0 0 0 0 0 20200 46168 37945 34992 201203 348032 407737 -159817 739788 579971 0 0 739788 579971 X MED13L PROVIDES SUPPORT FOR RESEARCH, ADVANCEMENT AND RAISING AWARENESS OF THE RARE GENETIC DISEASE, MED13L. THE OBJECTIVES OF MED13L IS TO RAISE AWARENESS IN THE LOCAL, NATIONAL AND INTERNATIONAL COMMUNITY ABOUT THE RARE GENETIC DISEASE, MED13L AND TO PROVIDE FUNDING FOR RESEARCH, DEVELOPMENT AND ADVANCEMENT INTO FIGHTING THIS DISEASE. THE ULTIMATE GOAL IS TO FIND OUT MORE ABOUT WHAT CAUSES MED13L AND FIND A CURE. IN OUR ENDEAVOR TO REACH THAT GOAL, MED13L STRIVES TO CREATE A SUPPORT SYSTEM FOR FAMILIES IMPACTED BY MED13L ALL THE WHILE PROVIDING FUNDING OPPORTUNITIES TO HEALTHCARE PROFESSIONALS AND RESEARCHERS WHO ARE HELPING TO FIND A CURE TO THIS RARE GENETIC DISEASE. 0 0 292840 292840 COORDINATE AND COLLABORATE WITH THE GLOBAL SCIENTIFIC COMMUNITY TO UNDERSTAND THE FUNCTION OF THE MED13L GENE IN ORDER TO DEVELOP EFFECTIVE TREATMENTS AND A CURE FOR MED13L SYNDROME. INCREASE MEDICAL COMMUNITY AND PUBLIC AWARENESS OF THE COMPLEXITY AND POTENTIAL SEVERITY OF MED13L SYNDROME. PROVIDE EDUCATIONAL AND EMOTIONAL SUPPORT FOR THOSE AFFECTED BY MED13L SYNDROME. RAISE MONEY TO FUND OUR GOALS. 292840 1 1 0 0 0 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 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 5 5 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 0 0 NJ X KATHLEEN BARRY BOYCHUCK 8477207905 155 NORTH MICHIGAN AVENUE SUITE CHICAGO IL 60601 X NICK SEAVER TREASURER 5.00 X X 0 0 0 KATHLEEN BARRY BOYCHUCK CHAIR 10.00 X X 0 0 0 VANESSA DIAS VICE CHAIR 10.00 X X 0 0 0 JENNIFER ROBERTSON SECRETARY 10.00 X X 0 0 0 INON SHAMPANIER TRUSTEE AS OF SEPT 2024 5.00 X 0 0 0 KELLY SEXTON TRUSTEE UNTIL SEPT 2024 0.00 X 0 0 0 KIM SOKORAI TRUSTEE UNTIL SEPT 2024 0.00 X 0 0 0 0 0 0 0 0 0 0 0 40885 129949 170834 26603 26603 0 40885 9222 -9222 -9222 188215 0 0 17381 292840 292840 1410 1410 20200 20200 15785 600 15185 486 486 283 283 11775 1615 10160 2543 2543 1405 1405 MEMBERSHIPS AND SUBSCRI 863 863 LICENSES AND PERMITS 305 305 SHIPPING AND POSTAGE 137 137 348032 292840 9024 46168 49357 116979 690431 462992 739788 579971 0 0 X 739788 579971 739788 579971 739788 579971 -159817 0 X 0 0 0 X 1556 99263 323934 602092 170834 1197679 1556 99263 323934 602092 170834 1197679 0 0 0 1197679 15732 26603 42335 15732 26603 42335 1556 99263 323934 617824 197437 1240014 0.96590 0.98510 0.03410 0.01490 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X X X X 1 TURNKEY FOUNDATION 1220 KENNEDALE SUBLETT RD KENNEDALE TX 76060 2024 DEVELOPMENT PLAN 0 0 20200 -20200 20200 -20200 NJ GOLF OUTING 40885 40885 9222 40885 40885 9222 9222 -9222 1 COMBINED BRAIN 1510 OLD HICKORY BLVD BRENTWOOD TN 37027 831825692 501(C)(3) 4781 0 STRATEGIC RESEARCH PLAN AND BIOSPECIMEN COLLECTION TRANSCRIPTA BIO INC (FKA RAREBASE PBC) 2882 GREER ROAD PALO ALTO CA 94303 852134862 164650 0 BIOMARKER DISCOVERY PROJECT AND DRUG DISCOVERY PROJECT USING RAREBASE (NOW TRANSCRIPTA BIO) FUNCTION PLATFORM VANDERBILT UNIVERSITY MEDICAL CENTER 1211 MEDICAL CENTER DRIVE NASHVILLE TN 37232 352528741 501(C)(3) 46000 0 EXPLORING THE IMPACT OF DISEASE MODIFYING COMPOUNDS IN MED13L PATIENT DERIVE ROWAN UNIVERSITY FOUNDATION INC 201 MULLICA HILL ROAD GLASSBORO NJ 08028 222482802 501(C)(3) 76984 0 UNDERSTANDING OF THE ROLE MITOCHONDRIAL DYSFUNCTION PLAYS IN THE PATHOOGY ASSOCIATED WITH MED13L SYNDROME MUTATIONS PART I, LINE 2: THE MED13L FOUNDATION MANAGES GRANT FUNDS THROUGH FORMAL GRANT AGREEMENTS, ENSURING FUNDS ARE ALLOCATED ACCORDING TO ESTABLISHED TERMS. OVERSIGHT OF GRANT ACTIVITIES AND FUND USE IS PROVIDED BY THE FOUNDATION'S SCIENTIFIC ADVISORY BOARD, WHICH ENSURES THAT RESEARCH ALIGNS WITH THE FOUNDATION'S MISSION AND THAT GRANT OBJECTIVES ARE MET RESPONSIBLY. PART I LINE 1 CONTINUATION OF ORGANIZATION'S MISSION STATEMENT (F) OFFER EMOTIONAL SUPPORT, CONNECT PATIENTS AND THEIR FAMILIES WITH RESOURCES, AND PROVIDE A PLATFORM FOR SHARING EXPERIENCES AND INSIGHTS; AND (G) ENGAGE IN ADVOCACY AND EFFORTS TO PROMOTE POLICIES AND INITIATIVES THAT BENEFIT INDIVIDUALS WITH MED13L. FORM 990, PART VI, SECTION B, LINE 11B 990 IS DISTRIBUTED TO THE BOARD FOR REVIEW BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C BASED ON THE CONFLICTS OF INTEREST POLICY FOR THE MED13L FOUNDATION, INC., OFFICERS, DIRECTORS (TRUSTEES), AND KEY EMPLOYEES ARE REQUIRED TO DISCLOSE ANNUALLY ANY INTERESTS THAT COULD GIVE RISE TO CONFLICTS. THIS REQUIREMENT IS OUTLINED IN ARTICLE VII OF THE POLICY, WHICH MANDATES THAT EACH TRUSTEE, OFFICER, AND COMMITTEE MEMBER MUST ANNUALLY SIGN A STATEMENT AFFIRMING THE FOLLOWING: 1. THEY HAVE RECEIVED A COPY OF THE CONFLICTS OF INTEREST POLICY. 2. THEY HAVE READ AND UNDERSTOOD THE POLICY. 3. THEY AGREE TO COMPLY WITH THE POLICY. 4. THEY UNDERSTAND THE CHARITABLE NATURE OF THE ORGANIZATION AND THE TAX-EXEMPT STATUS REQUIREMENTS. A. THE MED13L FOUNDATION REGULARLY MONITORS AND ENFORCES COMPLIANCE WITH ITS CONFLICTS OF INTEREST POLICY THROUGH ANNUAL DISCLOSURES AND DOCUMENTED PROCEEDINGS. EACH TRUSTEE, OFFICER, AND COMMITTEE MEMBER SIGNS AN ANNUAL STATEMENT AFFIRMING THEIR UNDERSTANDING AND COMPLIANCE WITH THE POLICY, WHICH IS TRACKED AS PART OF THE ORGANIZATION'S RECORDS. ADDITIONALLY, ARTICLE V MANDATES THAT BOARD AND COMMITTEE MEETING MINUTES DOCUMENT ANY CONFLICTS OF INTEREST, INCLUDING THE NATURE OF THE CONFLICT, ACTIONS TAKEN, AND DECISIONS MADE. THIS ENSURES ONGOING TRANSPARENCY AND ACCOUNTABILITY IN HANDLING POTENTIAL CONFLICTS THROUGHOUT THE YEAR. FORM 990, PART VI, SECTION C, LINE 19 UPON REQUEST