2025-07-23T11:21:43-05:00 2024-12-31 450250958 EIDE BAILLY LLP 19200 VON KARMAN AVE STE 850 IRVINE CA 926128522 990 2024-01-01 822661656 FORE BATTEN FOUNDATION FORE 4407086008 11312 US 15-501 NORTH 107-117 CHAPEL HILL NC 27517 KAREN KAHN PRESIDENT/CEO 4407086008 2025-07-22 1 0 EUGENE KIM CPA P00738418 9494530256 2025-07-22 2024 2025-03-06 01:10:19Z KAREN KAHN 11312 US 15-501 NORTH 107-117 CHAPEL HILL NC 27517 1176159 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 3 0 0 1598358 1105921 0 0 48821 10598 -96891 -44234 1550288 1072285 678091 284579 0 0 77187 71191 0 0 18224 970706 2330680 1725984 2686450 -175696 -1614165 1997270 383105 0 0 1997270 383105 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 346157 284579 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. 2286277 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. N/A 2632434 1 1 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 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 7 0 1 1 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 4 4 1 0 0 0 1 1 0 1 0 0 0 1 1 1 1 0 0 0 1 0 NC X KAREN KAHN 4407086008 11312 US 15-501 NORTH 107-117 CHAPEL HILL NC 27517 X DAVID KAHN DIRECTOR 4.00 X 0 0 0 KAREN KAHN PRESIDENT/CEO 10.00 X X 0 0 0 KATHRYN NIEDERER DIRECTOR 2.00 X 0 0 0 JENNIFER MCGINN DIRECTOR 2.00 X 0 0 0 MARLENA KAHN SECRETARY 1.00 X 0 0 0 0 0 0 0 0 0 0 0 1105921 50990 1105921 10598 10598 48990 48990 0 0 10650 1105921 54884 -44234 -44234 1072285 0 0 -33636 X 244579 244579 40000 40000 66000 33000 16500 16500 5191 2595 1298 1298 298660 289567 9093 3838 1919 1919 1998414 1997562 426 426 5495 5495 4174 4174 19038 19038 BANK FEE 1061 1061 2686450 2632434 35792 18224 664485 174756 1332785 208349 1997270 383105 0 0 X 0 0 0 0 1997270 383105 1997270 383105 1997270 383105 -1614165 0 X 0 0 0 X 964853 1624675 1576666 1598358 1105921 6870473 964853 1624675 1576666 1598358 1105921 6870473 457748 6412725 11421 177 2876 48821 10598 73893 120 96 300 516 6944882 0.92340 0.95190 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES GRANTMAKING 40000 0 0 0 0 0 0 40000 0 40000 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES TO SUPPORT INSTITUT NATIONAL DE LA RECHERCHE SCIENTIFIQUE'S RESEARCH FOR THE PURPOSE OF DISCOVERING AND MAKING AVAILABLE TO THE PUBLIC NEW AND IMPROVED MEDICAL PROCEDURES AND INFORMATION. 40000 ELECTRONIC FUNDS TRANSFER 0 1 0 0 0 0 0 0 PART I, LINE 2: IN ORDER TO MONITOR THE USE OF GRANTS, THE FORE BATTEN FOUNDATION REQUIRES THE RESEARCH INSTITUTE TO MAINTAIN A COMPLETE AND ACCURATE RECORD OF THE FUNDS RECEIVED AND EXPENSES INCURRED UNDER THE GRANTS. THE FOUNDATION MAY, AT ITS OWN EXPENSE AND ON REASONABLE NOTICE TO THE RESEARCH INSTITUTE AND DURING NORMAL BUSINESS HOURS, AUDIT OR HAVE AUDITED THE RECORDS OF THE RESEARCH INSTITUTE INSOFAR AS THEY RELATE TO THE ACTIVITIES FUNDED BY THIS GRANT. GOLF FUNDRAISER 1116571 1105921 10650 34678 20206 1116571 1105921 10650 34678 20206 54884 -44234 1 SANFORD RESEARCH 2301 E 60TH ST N SIOUX FALLS SD 57104 460450378 501(C)(3) 225666 0 TO SUPPORT AND PROMOTE THE PURSUIT OF THE HIGHEST CALIBER, PUBLISHABLE RESEARCH (1) RELATING TO THE DEVELOPMENT/DELIVERY OF QUALITY MEDICAL AND HEALTH CARE SERVICES, (2) ADVANCING MEDICAL OR SCIENTIFIC KNOWLEDGE AND SKILLS, AND/OR (3) BENEFITING THE EDUCATION OF HEALTH SCIENCE STUDENTS, RESIDENTS, HEALTH PROFESSIONALS AND THE GENERAL PUBLIC BDSRA 2780 AIRPORT DRIVE SUITE 342 COLUMBUS OH 43219 911397792 501(C)(3) 8913 0 TO FUND RESEARCH FOR A CURE FOR AND TO PROMOTE AWARENESS OF BATTEN DISEASE. 2 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 300 48990 FAIR MARKET VALUE X FAMILY ENTERTAINMENT 1 2000 RETAIL PRICE 0 0 0 PART I, COLUMN (B): THE NUMBER IN COLUMN (B) DENOTE THE QUANTITY OF ITEMS RECEIVED LINE 25 FORE BATTEN FOUNDATION RECEIVES A NONCASH CONTRIBUTIONS FOR THEIR FUNDRAISING EVENTS. THE ITEM INCLUDE GOLF CLUB EXPERIENCES 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 852. MANAGEMENT AND GENERAL EXPENSES 426. FUNDRAISING EXPENSES 426. TOTAL EXPENSES 1,704. MEDICAL RESEARCH: PROGRAM SERVICE EXPENSES 1,996,710. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 1,996,710.