2024-11-14T13:08:10-06:00 2023-12-31 270710060 CANTOR NOVAK BEAVER & PIKE PC 630 ROUTE 70 WEST CHERRY HILL NJ 08002 990 2023-01-01 822469441 THE MED13L FOUNDATION INC MED1 8565345470 17 TIMBER DRIVE BARRINGTON NJ 08007 KATHLEEN BARRY BOYCHUCK TREASURER 8477207905 2024-11-13 1 1 DANIEL D PIKE CPA P00776654 8562819010 2023 2024-10-15 13:58:12Z X KATHLEEN BARRY BOYCHUCK 17 TIMBER DRIVE BARRINGTON NJ 08007 617824 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; 0 0 0 10 0 0 323934 602092 0 0 0 15732 0 -8884 323934 608940 0 163258 0 0 0 0 0 0 2181 41607 37945 41607 201203 282327 407737 332051 739788 0 0 332051 739788 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 163258 163258 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. 163258 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 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 0 0 0 0 1 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 PRESIDENT 5.00 X X 0 0 0 KELLY SEXTON VICE PRESIDENT 5.00 X X 0 0 0 KATHLEEN BARRY BOYCHUCK TREASURER 10.00 X X 0 0 0 KIM SOKORAI TRUSTEE 5.00 X 0 0 0 VANESSA DIAS TRUSTEE 10.00 X 0 0 0 JENNIFER ROBERTSON SECRETARY 10.00 X X 0 0 0 0 0 0 0 0 0 0 0 29013 573079 602092 15732 15732 0 29013 8884 -8884 -8884 608940 0 0 6848 163258 163258 10745 10745 2500 2500 432 432 10090 8193 1897 1131 847 284 12386 12386 661 661 201203 163258 35764 2181 332051 49357 690431 332051 739788 0 0 X 332051 739788 332051 739788 332051 739788 407737 0 X 0 0 0 X 13097 1556 99263 323934 602092 1039942 13097 1556 99263 323934 602092 1039942 0 0 0 1039942 15732 15732 15732 15732 13097 1556 99263 323934 617824 1055674 0.98510 1.00000 0.01490 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED GOLF OUTING 29013 29013 8884 29013 29013 8884 8884 -8884 1 COMBINED BRAIN 1510 OLD HICKORY BLVD BRENTWOOD TN 37027 831825692 501(C)(3) 25787 0 STRATEGIC RESEARCH PLAN AND BIOSPECIMEN COLLECTION RAREBASE PBC 2882 GREER ROAD PALO ALTO CA 94303 852134862 86000 0 BIOMARKER DISCOVERY PROJECT AND DRUG DISCOVERY PROJECT USING RAREBASE FUNCTION PLATFORM PACIFIC IMMUNOLOGY 1672 MAIN ST STE E 171 RAMONA CA 92065 450505829 7143 0 PRODUCTION OF ANTIBODY FOR MED13L STATE UNIVERSITY OF IOWA 105 JESSUP HALL IOWA CITY IA 52242 426004813 170(C)(1) 38333 0 PHYSIOLOGICAL AND MOLECULAR SIGNATURES IN MOUSE MODELS OF MED13L SYNDROME 2 2 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 A, LINE 4 THE ORGANIZATION AMENDED AND RESTATED THE CERTIFICATE OF INCORPORATION ON NOVEMBER 30, 2023. THE AMENDMENT INCLUDES THE CHANGE OF THE NAME OF CORPORATION. THE ORIGINAL NAME OF THE CORPORATION WAS "MED13L A NJ NONPROFIT CORPORATION." THE NEW NAME OF THE CORPORATION ADOPTED HEREBY IS "THE MED13L FOUNDATION, INC." DUE TO THIS CHANGE, THE DOCUMENTS HAVE BEEN ATTACHED TO THE FORM 990 AS REQUIRED. THE ORGANIZATION AMENDED AND RESTATED THE BYLAWS ON NOVEMBER 30, 2023. THE ORGANIZATION HAS UPDATED THEIR MISSION STATEMENT. THE ORGANIZATION NO LONGER HAS MEMBERS ENTITLED TO VOTE ON ANY MATTER. POWERS, COMPOSITION AND TENURE OF THE BOARD OF TRUSTEES HAVE BEEN UPDATED. THE DOCUMENTS HAVE BEEN ATTACHED TO THE FORM 990. 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