2024-10-10T15:31:38-05:00 2023-12-31 232108173 RKL LLP 102 PICKERING WAY STE 300 EXTON PA 19341 990 2023-01-01 821439459 STXBP1 FOUNDATION STXB 5137206302 PO BOX 1148 HOLLY SPRINGS NC 27540 HEATHER JONES TREASURER 5137206302 2024-10-01 1 0 STEPHANIE E KANE CPA P01275157 4848742200 2024-09-30 2023 2024-10-15 13:58:12Z CHARLENE SON RIGBY PO BOX 1148 HOLLY SPRINGS NC 27540 739539 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. 8 8 0 30 0 0 1830890 694492 0 0 0 41035 0 0 1830890 735527 130333 385588 0 0 0 0 0 0 5798 378883 938271 509216 1323859 1321674 -588332 1701392 1367619 99962 354521 1601430 1013098 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. 1 0 362118 385588 494159 FUNDED MULTIPLE PRECLINICAL GRANTS TO VARIOUS ORGANIZATIONS TO FURTHER RESEARCH AROUND STXBP1 141730 HOSTED IN PERSON STXBP1 SUMMIT+ TO UPDATE FAMILIES ON CURRENT RESEARCH AS WELL AS PROVIDE ADDITIONAL RESOURCES TO BE USED IN EVERYDAY LIFE 749842 0 LAUNCHED A LONGITUDINAL MULTI SITE NATURAL HISTORY STUDY FOR PATIENTS. 1253690 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 1 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 8 8 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 0 0 PA 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 DIRECTOR, DEVELOPMENT 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 CRISTINA BRENNAN SECRETARY 5.00 X X 0 0 0 JARED BARNUM DIRECTOR, TECHNOLOGY 5.00 X X 0 0 0 DANIELE GREINER DIRECTOR, DEVELOPMENT 5.00 X X 0 0 0 0 0 0 0 0 0 0 JAMES GOSS 1521 NETWORK DRIVE CANONSBURG PA 15317 SCIENTIFIC CONSULTING 165000 1 47044 647448 694492 41035 41035 4012 47044 4012 0 735527 0 0 41035 X 385588 385588 38715 38715 9655 9655 716925 716925 5538 5538 414 414 4034 4034 151177 151177 BANK FEES 7305 7305 PROFESSIONAL ORGANIZATI 2116 2116 MISCELLANEOUS 1914 1914 COMPLIANCE FEES 478 218 260 1323859 1253690 64371 5798 1648170 1337910 44232 26405 8990 3304 1701392 1367619 99962 349521 5000 99962 354521 X 1601430 1013098 1601430 1013098 1701392 1367619 -588332 0 X X 0 1 X 1 0 X 112356 300412 587683 1830890 518159 3349500 112356 300412 587683 1830890 518159 3349500 499580 2849920 3349500 0.85080 0.85080 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 763539 24000 4012 28012 735527 0 735527 1351871 24000 4012 28012 1323859 0 1323859 PART X, LINE 2: THE ORGANIZATION IS EXEMPT FROM FEDERAL AND STATE INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND THEREFORE HAS MADE NO PROVISION FOR INCOME TAXES IN THE ACCOMPANYING FINANCIAL STATEMENTS. THE ORGANIZATION HAS ANALYZED TAX POSITIONS TAKEN FOR FILING WITH THE INTERNAL REVENUE SERVICE AND THE STATE JURISDICTIONS FOR WHICH IT HAS NEXUS. THE ORGANIZATION BELIEVES THAT INCOME TAX FILING POSITIONS WILL BE SUSTAINED UPON EXAMINATION AND DOES NOT ANTICIPATE ANY ADJUSTMENTS THAT WOULD RESULT IN A MATERIAL ADVERSE EFFECT ON THE ORGANIZATION'S FINANCIAL CONDITION, RESULTS OF OPERATIONS OR CASH FLOWS. ACCORDINGLY, THE ORGANIZATION HAS NOT RECORDED ANY RESERVES, OR RELATED ACCRUALS FOR INTEREST AND PENALTIES FOR UNCERTAIN INCOME TAX POSITIONS AT DECEMBER 31, 2022. THE ORGANIZATION IS SUBJECT TO ROUTINE AUDITS BY TAXING JURISDICTIONS; HOWEVER, THERE ARE CURRENTLY NO AUDITS FOR ANY TAX PERIODS IN PROGRESS. PART XI, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISER EXPENSES 4,012. PART XII, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISER EXPENSES 4,012. 0 0 0 0 0 0 0 0 0 0 VUMC TO FUND NATURAL HISTORY STUDY 167413 0 1 0 0 0 0 0 0 5K RACES 51056 47044 4012 0 3618 65 329 51056 47044 4012 3618 65 329 4012 0 0 UNIVERSITY OF PENNSYLVANIA - HELLER LAB 3400 CIVIC CENTER BOULEVARD BUILDING 421 PHILADELPHIA PA 191045158 231352685 501(C)(3) 38688 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) 82500 0 TO FUND CLINICAL TRIAL CHILDREN'S HOSPITAL COLORADO 13123 E 16TH AVE AURORA CO 80045 454182666 501(C)(3) 104399 0 TO FUND RESEARCH UPLIIFTING ATHLETES 8 ATKINSON DRIVE UNIT 574 DOYLESTOWN PA 18901 341986485 501(C)(3) 10000 0 TO FUND RESEARCH BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 501(C)(3) 100000 0 TO FUND RESEARCH FORM 990, PART III, LINE 2 THE FOUNDATION LAUNCHED A LONGITUDINAL MULTI SITE NATURAL HISTORY STUDY FOR PATIENTS. THE FOUNDATION ALSO FUNDED MULTIPLE PRECLINICAL GRANTS TO VARIOUS ORGANIZATIONS TO FURTHER RESEARCH AROUND STXBP1. FUTHERMORE, THE FOUNDATION HOSTED AN IN PERSON STXBP1 SUMMIT+ TO UPDATE FAMILIES ON CURRENT RESEARCH, AS WELL AS PROVIDE ADDITIONAL RESOURCES TO BE USED IN EVERYDAY LIFE. 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 716,925. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 716,925. PART XII, LINE 2C FINANCE COMMITEE; NO CHANGE