2024-11-14T15:33:47-06:00 2023-12-31 450250958 EIDE BAILLY LLP 19200 VON KARMAN AVE STE 850 IRVINE CA 926128522 990 2023-01-01 822661656 FORE BATTEN FOUNDATION FORE 4407086008 11312 US 15-501 NORTH 107-117 CHAPEL HILL NC 27517 KAREN KAHN PRESIDENT/CEO 4407086008 2024-11-13 1 1 EUGENE KIM P00738418 9494530256 2024-11-13 2023 2024-10-15 13:58:12Z KAREN KAHN 11312 US 15-501 NORTH 107-117 CHAPEL HILL NC 27517 2252771 0 X HTTP://WWW.FOREBATTEN.ORG X 2017 AZ THIS ORGANIZATION IS ORGANIZED EXCLUSIVELY FOR EDUCATIONAL AND CHARITABLE PURPOSES, INCLUDING TO EDUCATE THE PUBLIC ABOUT AND TO OBTAIN FUNDING FOR RESEARCH TO CURE RARE DISEASES, INCLUDING SPECIFICALLY JUVENILE BATTEN DISEASE. 4 4 1 5 0 0 1576666 1598358 96 0 2876 48821 -127035 -96891 1452603 1550288 1066532 678091 0 0 64450 77187 0 0 19739 29029 970706 1160011 1725984 292592 -175696 2172966 1997270 0 0 2172966 1997270 X TO FUND PIONEERING RESEARCH AND COMPASSIONATELY SUPPORT THE BATTEN COMMUNITY. THE ORGANIZATION WORKS TIRELESSLY TO GIVE CHILDREN WITH BATTEN DISEASE THE BEST POSSIBLE LIFE, TO SPREAD AWARENESS OF THE URGENCY TO FUND NEW TREATMENTS, AND TO HELP ALL FAMILIES AFFECTED BY BATTEN DISEASE. 0 0 769026 678091 THIS ORGANIZATION MADE GRANTS TO SEVERAL TAX-EXEMPT 501(C)(3) ORGANIZATIONS THAT ADVANCE THE OBJECTIVES OF THIS ORGANIZATION TO PROMOTE AWARENESS OF BATTEN DISEASE AS WELL AS TO PROMOTE OPPORTUNITIES FOR SCIENTISTS TO COME TOGETHER TO CREATE AND FUND INNOVATIVE RESEARCH PROPOSALS TO WORK TOWARD A CURE FOR BATTEN DISEASE. 900420 THE FOREBATTEN FOUNDATION RECEIVED IND CLEARANCE FROM THE FOOD AND DRUG ADMINISTRATION TO PROCEED WITH THE CLINICAL INVESTIGATION FOR FBF-010 (ZEBRONKYSEN) PAVING THE WAY TO TREAT PATIENTS WITH THE UNIQUE CLN3 C.569DUPG MUTATION. ZEBRONKYSEN IS PAVING A PATH TOWARDS A BETTER FUTURE FOR NEWLY DIAGNOSED CHILDREN AND WILL BE PART OF THE EVOLVING STORY OF PERSONALIZED MEDICINE. THIS EFFORT ALSO PROVIDES PROOF OF CONCEPT TO DEVELOP AN ASO TREATMENT FOR THE COMMON CLN3 MUTATION AND CREATES A ROADMAP TO FUTURE TREATMENTS. 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UNIVERSITY OF ROCHESTER 910 GENESSE STREET SUITE 200 ROCHESTER NY 14611 160743209 501(C)(3) 73417 0 TO SUPPORT THE RESEARCH FOR THE PURPOSE OF THE EVALUATION OF PHOTORECEPTOR OUTER SEGMENT PHAGOCYTOSIS FUNCTION IN THE RETINA/RETINAL CELLS OBTAINED FROM A PORCINE MODEL OF CLN3-BATTEN DISEASE RARE SISTERS BATTEN FOUNDATION PO BOX 746561 ARVADA CO 80006 844406415 501(C)(3) 80000 0 TO SUPPORT OTHER BATTEN FOUNDATIONS UNC HEALTH FOUNDATION 123 W FRANKLINE ST 510 CHAPEL HILL NC 27516 566057494 501(C)(3) 75834 0 TO SUPPORT BATTEN RESEARCH 6 0 PART I, LINE 2: THE ORGANIZATION REQUESTS PERIODIC REPORTING FROM GRANT RECIPIENTS TO ENSURE GRANT FUNDS ARE EXPENDED FOR THE PURPOSE THEY WERE ISSUED. X AUCTION 289 605292 AUCTION PRICE 0 0 0 PART I, COLUMN (B): THE NUMBERS IN COLUMN (B) DENOTE THE QUANTITY OF ITEMS RECEIVED. LINE 25 FORE BATTEN FOUNDATION RECEIVES VARIOUS NONCASH CONTRIBUTIONS FOR THEIR FUNDRAISING EVENTS. THESE ITEMS INCLUDE HOTEL STAYS, GOLF CLUB EXPERIENCES, DINNERS, AND VARIOUS OTHER PACKAGES. FORM 990, PART VI, SECTION A, LINE 2 DAVID KAHN, DIRECTOR KAREN KAHN, PRESIDENT FAMILY MARLENA KAHN, SECRETARY DAVID KAHN, DIRECTOR JENNIFER MCGINN, DIRECTOR FAMILY KATHRYN NIEDERER, DIRECTOR KAREN KAHN, PRESIDENT FAMILY FORM 990, PART VI, SECTION A, LINE 6 THE ORGANIZATION HAS ONE CLASS OF MEMBERS WHO HAVE THE RIGHT TO ELECT THE BOARD OF DIRECTORS OF THE ORGANIZATION. THE MEMBERS HAVE NO RIGHT TO RECEIVE ANY SHARE OF THE ORGANIZATION'S PROFITS OR NET ASSETS UPON THE ORGANIZATION'S DISSOLUTION. FORM 990, PART VI, SECTION A, LINE 7A THE ORGANIZATION HAS ONE CLASS OF MEMBERS WHO HAVE THE RIGHT TO ELECT THE BOARD OF DIRECTORS OF THE ORGANIZAION. FORM 990, PART VI, SECTION A, LINE 8B THE ORGANIZATION HAS NO COMMITTEES WITH AUTHORITY TO ACT ON BEHALF OF THE BOARD. FORM 990, PART VI, SECTION B, LINE 11B THE ORGANIZATION'S RETURN PREPARER (AN OUTSIDE ACCOUNTING FIRM) EMAILS FORM 990 TO THE ORGANIZATION'S FOUNDATION DIRECTOR, WHO REVIEWS AND EMAILS THE FORM 990 TO EACH DIRECTOR AND OFFICER OF THE ORGANIZATION FOR REVIEW BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C THE ORGANIZATION PERIODICALLY REVIEWS (A) WHETHER COMPENSATION ARRANGEMENTS AND BENEFITS (IF ANY) ARE REASONABLE, BASED ON COMPETENT SURVEY INFORMATION, AND ARE THE RESULT OF ARM'S LENGTH BARGAINING; AND (B) WHETHER PARTNERSHIPS, JOINT VENTURES, AND ARRANGEMENTS WITH MANAGEMENT ORGANIZATIONS (IF ANY) CONFORM TO THE ORGANIZATION'S WRITTEN POLICIES, ARE PROPERLY RECORDED, REFLECT REASONABLE INVESTMENT OR PAYMENTS FOR GOODS AND SERVICES, FURTHER CHARITABLE PURPOSES AND DO NOT RESULT IN INUREMENT, IMPERMISSIBLE PRIVATE BENEFIT OR IN AN EXCESS BENEFIT TRANSACTION. NO SUCH ARRANGEMENTS EXIST AS OF THE FILING OF THIS FORM 990. ADDITIONALLY, EACH DIRECTOR AND OFFICER OF THE ORGANIZATION IS REQUIRED TO ANNUALLY SIGN A STATEMENT WHICH AFFIRM THAT SUCH PERSON (A) HAS RECEIVED A COPY OF THE CONFLICTS OF INTEREST POLICY; (B) HAS READ AND UNDERSTANDS THE POLICY; (C) HAS AGREED TO COMPLY WITH THE POLICY; AND (D) UNDERSTANDS THE ORGANIZATION IS CHARITABLE AND IN ORDER TO MAINTAIN ITS FEDERAL TAX EXEMPTION IT MUST ENGAGE PRIMARILY IN ACTIVITIES WHICH ACCOMPLISH ONE OR MORE OF ITS TAX-EXEMPT PURPOSES. FORM 990, PART VI, SECTION B, LINE 15B THE ORGANIZATION PERIODICALLY REVIEWS WHETHER ANY COMPENSATION ARRANGEMENTS AND BENEFITS ARE REASONABLE, BASED ON COMPETENT SURVEY INFORMATION, AND ARE THE RESULT OF ARM'S LENGTH BARGAINING. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART IX, LINE 11G PAYROLL PROCESSING: PROGRAM SERVICE EXPENSES 886. MANAGEMENT AND GENERAL EXPENSES 443. FUNDRAISING EXPENSES 443. TOTAL EXPENSES 1,772. CONFERENCE ATTENDANCE FEE: PROGRAM SERVICE EXPENSES 8,895. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 8,895. MEDICAL EXPENSES: PROGRAM SERVICE EXPENSES 845,083. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 845,083.