2022-11-15T09:39:15-06:00 2021-12-31 232108173 RKL LLP 1330 BROADCASTING ROAD WYOMISSING PA 196106008 990 2021-01-01 821439459 STXBP1 FOUNDATION STXB 5137206302 PO BOX 1148 HOLLY SPRINGS NC 27540 HEATHER JONES TREASURER 5137206302 2022-11-11 1 HEATHER JONES 999009999 STEPHANIE E KANE CPA P01275157 6103761595 2022-11-11 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z X CHARLENE SON RIGBY PO BOX 1148 HOLLY SPRINGS NC 27540 587683 0 X WWW.STXBP1DISORDERS.ORG X 2017 PA TO CREATE AWARENESS IN THE DISORDERS ASSOCIATED WITH STXBP1 MUTATIONS. FUND AND DRIVE RESEARCH DISCOVERY OF A CURE. PROVIDE FAMILIES WITH TOOLS TO HELP THEM UNDERSTAND THE DISEASE & HOW TO GET INVOLVED. ADVOCATE TO IMPROVE EARLY DETECTION. FOSTER ACTIVISM TO HELP CHANGE POLICIES IN FAVOR OF ORPHANED DISEASES. IMPROVE THE LIVES OF OUR STXBP1 FAMILIES. 6 6 0 20 0 0 296852 587683 0 0 0 0 0 0 296852 587683 0 332225 0 0 0 0 0 0 50577 12494 294156 12494 626381 284358 -38698 318455 507143 0 227387 318455 279756 X TO CREATE AWARENESS IN THE DISORDERS ASSOCIATED WITH STXBP1 MUTATIONS. FUND AND DRIVE RESEARCH DISCOVERY OF A CURE. PROVIDE FAMILIES WITH TOOLS TO HELP THEM UNDERSTAND THE DISEASE & HOW TO GET INVOLVED. ADVOCATE TO IMPROVE EARLY DETECTION. FOSTER ACTIVISM TO HELP CHANGE POLICIES IN FAVOR OF ORPHANED DISEASES. IMPROVE THE LIVES OF OUR STXBP1 FAMILIES. 0 0 540203 332225 FUNDED MULTIPLE PRECLINICAL GRANTS TO VARIOUS ORGANIZATIONS TO FURTHER RESEARCH AROUND STXBP1 19273 HOSTED VIRTUAL STXBP1 SUMMIT+ TO UPDATE FAMILIES ON CURRENT RESEARCH AS WELL AS PROVIDE ADDITIONAL RESOURCES TO BE USED IN EVERYDAY LIFE 559476 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 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 X 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 X 6 6 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 0 0 PA IL X X X HEATHER JONES 5137206302 308 VICTORY FALLS DRIVE APEX NC 27539 X CHARLENE SON RIGBY PRESIDENT 30.00 X X 0 0 0 MELISSA HIOCO SECRETARY & DIRECTOR, DEVE 30.00 X X 0 0 0 JACQUELINE STEINBERG VICE PRESIDENT & SCIENTIFI 10.00 X X 0 0 0 HEATHER JONES TREASURER 15.00 X X 0 0 0 JENNIFER CLATTERBUCK DIRECTOR, COMMUNITY ENGAGE 5.00 X X 0 0 0 RUSS NOVY DIRECTOR, MARKETING & BRAN 5.00 X X 0 0 0 0 0 0 0 0 0 0 RAREBASE 1804 EMBARCADERO RD SUITE 201 PALO ALTO CA 94303 DATA RETENTION AND RESEARCH 150030 1 89624 498059 587683 0 89624 0 0 587683 0 0 0 X 332225 332225 2744 2744 5745 5745 236295 207791 28504 5419 93 5326 49 21 28 2442 2442 31072 19439 4626 7007 BANK FEES 6653 6653 COMPLIANCE FEES 3040 3040 PROFESSIONAL ORGANIZATI 650 650 MISCELLANEOUS 47 47 626381 559476 16328 50577 278090 484808 40365 18897 3438 318455 507143 98322 129065 0 227387 X 268179 279256 50276 500 318455 279756 318455 507143 X -38698 -1 X X 1 X 0 1 0 X 61460 112356 300412 587683 1061911 61460 112356 300412 587683 1061911 114548 947363 1061911 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 587683 0 587683 0 587683 626381 0 626381 0 626381 PART X, LINE 2: ACCOUNTING PRINCIPLES GENERALLY ACCEPTED IN THE UNITED STATES OF AMERICA REQUIRE MANAGEMENT TO EVALUATE TAX POSITIONS TAKEN BY THE ORGANIZATION, INCLUDING WHETHER THE ENTITY IS EXEMPT FROM INCOME TAXES. MANAGEMENT EVALUATED THE TAX POSITIONS TAKEN AND CONCLUDED THAT THE ORGANIZATION HAD TAKEN NO UNCERTAIN TAX POSITIONS THAT REQUIRE RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS. THEREFORE, NO PROVISION OR LIABILITY FOR INCOME TAXES HAS BEEN INCLUDED IN THE FINANCIAL STATEMENTS. WITH FEW EXCEPTIONS, THE ORGANIZATION IS NO LONGER SUBJECT TO INCOME TAX EXAMINATIONS BY THE U.S. FEDERAL, STATE, OR LOCAL TAX AUTHORITIES FOR YEARS BEFORE DECEMBER 31, 2018. 5K RACES 80769 80769 80769 80769 0 COLUMBIA UNIVERSITY 116 STREET BROADWYA NEW YORK NY 10027 135598093 501(C)(3) 89442 0 TO FUND RESEARCH UNIVERSITY OF PENNSYLVANIA - HELLER LAB 3400 CIVIC CENTER BOULEVARD BUILDING 421 PHILADELPHIA PA 191045158 231352685 501(C)(3) 154753 0 TO FUND RESEARCH CHILDREN'S HOSPITAL OF PHILADELPHIA 3401 CIVIC CENTER BOULEVARD PHILADELPHIA PA 19104 231352166 501(C)(3) 50000 0 TO FUND RESEARCH WEILL CORNELL MEDICINE 1300 YORK AVENUE NEW YORK NY 10065 136094042 501(C)(3) 15000 0 TO FUND CLINICAL TRIAL CHILDREN'S HOSPITAL COLORADO 13123 E 16TH AVE AURORA CO 80045 454182666 501(C)(3) 23030 0 TO FUND RESEARCH 5 FORM 990, PART V, LINE 1C: THE ORGANIZATION DID NOT HAVE ANY INSTANCES WHERE BACKUP WITHHOLDING WAS REQUIRED; HOWEVER, IF THE SITUATION WOULD ARISE, THE ORGANIZATION IS AWARE OF THE REPORTING REQUIREMENTS AND WOULD HANDLE THAT ACCORDINGLY. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS REVIEWED BY THE TREASURER AND PRESIDENT PRIOR TO SUBMISSION TO THE IRS. FORM 990, PART VI, SECTION B, LINE 12C EACH DIRECTOR, PRINCIPAL OFFICER AND MEMBER OF A COMMITTEE WITH GOVERNING BOARD DELEGATED POWERS SHALL ANNUALLY SIGN A STATEMENT WHICH AFFIRMS SUCH PERSON HAS RECEIVED A COPY OF THE POLICY, READ AND UNDERSTANDS THE POLICY, AGREES TO COMPLY, AND UNDERSTANDS THAT THE CORPORATION MUST ENGAGE PRIMARILY IN ACTIVITIES WHICH ACCOMPLISH ONE OR MORE OF ITS TAX-EXEMPT PURPOSES TO MAINTAIN ITS FEDERAL TAX EXEMPTION. TO ENSURE THE CORPORATION OPERATES IN A MANNER CONSISTENT WITH CHARITABLE PURPOSES AND DOES NOT ENGAGE IN ACTIVITIES THAT COULD JEOPARDIZE ITS TAX-EXEMPT STATUS, PERIODIC REVIEWS SHALL BE CONDUCTED. FORM 990, PART VI, SECTION C, LINE 19 YES, THE ORGANIZATION'S OWN WEBSITE. FORM 990, PART IX, LINE 11G OTHER RESEARCH COSTS: PROGRAM SERVICE EXPENSES 207,791. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 400. TOTAL EXPENSES 208,191. CONSULTING: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 28,104. TOTAL EXPENSES 28,104. FORM 990, PART XI, LINE 9: ROUNDING -1. FORM 990, PART XII, LINE 1: MODIFIED CASH BASIS FORM 990, PART XII, LINE 2C: THE FINANCE COMMITTEE IS RESPONSIBLE FOR THE OVERSIGHT OF THE AUDIT, REVIEW, OR COMPILATION OF ITS FINANCIAL STATEMENTS AND THE SELECTION OF AN INDEPENDENT ACCOUNTANT; NO CHANGE FROM PRIOR YEAR.