2025-06-12T08:51:21-05:00 2024-12-31 470900880 CALIBRE CPA GROUP PLLC 7501 WISCONSIN AVENUE SUITE 1200 WEST BETHESDA MD 20814 990 2024-01-01 840960471 THE NATIONAL FRAGILE X FOUNDATION NATI 8006888765 1012 14TH ST NW 500 WASHINGTON DC 20005 HILARY ROSSELOT EXECUTIVE DIRECTOR 8006888765 2025-06-12 1 0 ELIZABETH SALEEBY P01324914 2023319880 2024 2025-03-06 01:10:19Z HILARY ROSSELOT 1012 14TH ST NW 500 WASHINGTON DC 20005 3053078 0 X WWW.FRAGILEX.ORG X 2001 CA TO PROVIDE UNWAVERING SUPPORT FOR EVERY FAMILY AFFECTED BY FRAGILE X WHILE RELENTLESSLY PURSUING A CURE. 14 14 0 0 0 0 1507800 1570715 252970 469180 47771 97561 -6468 -3299 1802073 2134157 159325 161470 0 0 739211 746798 0 0 151170 902346 1216454 1800882 2124722 1191 9435 3572020 3843116 1081559 1351946 2490461 2491170 THE NATIONAL FRAGILE X FOUNDATION SERVES THE ENTIRE FRAGILE X COMMUNITY TO LIVE THEIR BEST LIVES BY PROVIDING THE KNOWLEDGE, RESOURCES, AND TOOLS UNTIL, AND EVEN AFTER, MORE EFFECTIVE TREATMENTS AND A CURE ARE ACHIEVED. 0 0 594889 11915 340331 EDUCATION AND SUPPORT - THE NFXF PROVIDES PERSONALIZED SUPPORT, RESOURCES AND REFERRALS TO INDIVIDUALS AND FAMILIES ON THE MULTITUDE OF ISSUES THEY FACE, INCLUDING DIAGNOSIS, GENETICS, BEHAVIOR, TREATMENTS, EDUCATIONAL PLANNING, EMPLOYMENT AND ADULT ISSUES. THE NFXF ORGANIZES EDUCATIONAL CONENT INCLUDING RESOURCES, WEBINARS, VIRUTAL EVENTS, AND EDUCATIONAL CONFERENCES FOR FAMILIES AND PROFESSIONALS ABOUT FRAGILE X SYNDROME AND THE ASSOCIATED CONDITIONS AND DISORDERS TO PROVIDE HOPE AND HELP FAMILIES OVERCOME THE DAILY CHALLENGES OF LIVING WITH FX. 694377 119211 126494 RESEARCH GRANTS - THE NFXF FACILITATES SEVERAL MAJOR RESEARCH STRATEGIES. THE NFXF DATA REPOSITORY, WHICH LEVERAGES PREVIOUSLY COLLECTED DATA FOR NEW PROOF-OF-CONCEPT DRUG TREAMTENT, OUTCOME MEASURE DEVELOPMENT, AND OTHER MEANINGFUL SCIENTIFIC WORK. THE NFXF ALSO FUNDS SUMMER SCHOLAR RESEARCH AWARDS TO PROMOTE THE DEVELOPMENT OF YOUNGER SCIENTISTS IN THE FIELD. THE NFXF ALSO ENABLES A RESEARCH READINESS PROGRAM, A COLLABORATIVE PIPELINE SUPPORTING THE DEVELOPMENT AND EXECUTION OF SCIENTIFICALLY-SOUND, RELEVANT, PATIENT-CENTRIC RESEARCH FROM INITIAL PROGRAM DEVELOPMENT THROUGH RESULTS DISSEMINATION. 196844 4492 2355 ADVOCACY - THE NFXF ORGANIZES AND SUPPORTS A VARIETY OF PERSONAL AND LEGISLATIVE ADVOCACY INITIATIVES. THIS INCLUDES THE VIBRANT AND DEDICATED NETWORK OF VOLUNTEER-LED CHAPTERS ACROSS THE U.S., THE COMMUNITY SUPPORT NETWORK, THESE CHAPTERS DELIVER THE NFXF MISSION ON A LOCAL LEVEL. THE NFXF FACILITATES A YEAR-ROUND LEGISLATIVE ADVOCACY PROGRAM THAT INCLUES AN ANNUAL FLY IN FOR FAMILIES LIVING WITH FRAGILE X TO ADVOCATE FOR RESEARCH FUNDIN-G FOR FRAGILE X AND LEGISLATION THAT POSITIVELY IMPACTS THE COMMUNITY. 295722 25852 0 295722 25852 1781832 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 2 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 X 14 14 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 0 0 CA X X KIM TOMAN 2027476201 1012 14TH ST NW SUITE 500 WASHINGTON DC 20005 HILARY ROSSELOT EXECUTIVE DIRECTOR 40.00 X X 143381 0 0 LAURIE BRIDGES BOARD PRESIDENT 2.00 X X 0 0 0 KARA FRECH BOARD VICE-PRESIDENT 2.00 X X 0 0 0 JORDAN CROTTY BOARD TREASURER 2.00 X X 0 0 0 ABBY GAUNT BOARD SECRETARY 2.00 X X 0 0 0 REYMUNDO LOZANO BOARD MEMBER 1.00 X 0 0 0 DENNY HAUGEN BOARD MEMBER 1.00 X 0 0 0 REBECCA SCHAEFFER BOARD MEMBER 1.00 X 0 0 0 SHARI SILVER BOARD MEMBER 1.00 X 0 0 0 VICTORIA WILKINS BOARD MEMBER 1.00 X 0 0 0 TAMARO HUDSON BOARD MEMBER 1.00 X 0 0 0 DAVID TILLMAN BOARD MEMBER 1.00 X 0 0 0 JACQUELYN COLEMAN BOARD MEMBER 1.00 X 0 0 0 SUSAN HOWELL BOARD MEMBER 1.00 X 0 0 0 PEGGY FLANAGAN BOARD MEMBER 1.00 X 0 0 0 KRISTIN BOGART SENIOR DIRECTOR, DEVELOPMENT & COMMUNICATION 40.00 X 117823 0 13424 261204 0 13424 2 0 0 0 0 89233 1481482 1570715 CONFERENCES AND MEETIN 900099 340331 340331 SERVICE FEES 900099 126494 126494 OTHER PROGRAM REVENUE 900099 2355 2355 469180 83449 83449 929734 915622 14112 14112 14112 0 89233 3299 -3299 -3299 2134157 469180 0 94262 X 114352 114352 47118 47118 143381 114705 14338 14338 489094 347110 63373 78611 54246 38585 7074 8587 60077 43866 7382 8829 23116 23116 40000 40000 535004 519864 10180 4960 12745 250 12495 18943 10512 7211 1220 31545 9377 11229 10939 13927 9231 2923 1773 325736 314544 11192 15575 15069 506 15237 15237 CLINIC COMPENSATION 148550 148550 0 0 MISCELLANEOUS 18351 585 17766 0 BANK AND CREDIT CARD FE 14415 4804 193 9418 CSN GROUPS 3310 3310 0 0 2124722 1781832 191720 151170 2630834 2718933 22228 12750 17318 48549 171409 54830 51152 116579 850488 946305 3572020 3843116 101570 143758 979989 1208188 1081559 1351946 X 2387741 2420202 102720 70968 2490461 2491170 3572020 3843116 9435 -8726 0 X X 0 1 X 1 0 X 1233854 1385797 2562898 1435676 1546365 8164590 1233854 1385797 2562898 1435676 1546365 8164590 1487258 6677332 1290 844 1762 48081 83449 135426 447 2530 72256 2355 77588 8377604 1924427 0.79700 0.81390 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 1 40000 0 0 40000 0 SCHEDULE C, PART II-B, LINE 1G PROFESSIONAL LOBBYING FEES PAID TO AN INDEPENDENT THIRD PARTY TO COMMUNICATE DIRECTLY WITH LEGISLATORS. 3109 1663 1446 168300 53167 115133 116579 X 2128730 -8726 3299 -5427 2134157 0 2134157 2128021 3299 3299 2124722 0 2124722 PART X, LINE 2: MANAGEMENT HAS EVALUATED THE FOUNDATION'S TAX POSITIONS AND CONCLUDED THAT THERE ARE NO UNCERTAIN TAX POSITIONS THAT REQUIRE ADJUSTMENT TO OR DISCLOSURE IN THE ACCOMPANYING FINANCIAL STATEMENTS. PART XI, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 3,299. PART XII, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 3,299. X STRIDES 37367 37367 1690 FRAGILE X CHRISTMAS 28191 28191 1609 1 23675 23675 0 89233 89233 3299 3299 -3299 1 CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVE CINCINNATI OH 452293039 310833936 501(C)(3) 49830 0 SUB AWARD REGENTS OF THE UNIVERSITY OF MINNESOTA 200 OAK STREET SE MINNEAPOLIS MN 554552070 416007513 16317 0 SUB AWARD UNIVERSITY OF CALIFORNIA DAVIS 1850 RESEARCH PARK DRIVE SUITE 300 DAVIS CA 956186153 946036494 13919 0 SUB AWARD UNIVERSITY OF COLORADO DENVER 13123 E 16TH AVENUE AURORA CO 800457106 846000555 34286 0 SUB AWARD 1 3 ADVOCACY DAY 8 4492 FLY WITH ME 20 5853 CONFERENCE - MINTZ 10 11915 CONFERENCE - DISCOUNT CODE 53 9877 CLINIC REIMBURSEMENT FXCRC 18 4981 SUMMER SCHOLARS 4 10000 PART I, LINE 2: NATIONAL FRAGILE X FOUNDATION REQUIRES ONGOING FEEDBACK IN THE FORM OF ORAL AND WRITTEN REPORTS IN ORDER TO MONITOR THE PROGRESS OF EACH GRANT RECIPIENT. THE FOUNDATION ALSO RECEIVES STATUS REPORTS ON ONGOING RESEARCH DEVELOPMENTS. FORM 990, PART VI, SECTION B, LINE 11B THE DRAFT 990 WILL BE PRESENTED TO THE FINANCE COMMITTEE. AFTER IT IS APPROVED BY THE FINANCE COMMITTEE IT WOULD BE PRESENTED AND APPROVED BY THE BOARD. FORM 990, PART VI, SECTION B, LINE 12C MEMBERS OF THE BOARD OF DIRECTORS REVIEW ALL POTENTIAL CONFLICTS OF INTEREST AT LEAST ANNUALLY. THE EXECUTIVE DIRECTOR AND ALL BOARD MEMBERS ARE REQUIRED TO DISCLOSE (IN WRITING) POTENTIAL CONFLICTS AND ANY RELATED THIRD PARTY AFFILIATIONS. LOANS BETWEEN THE ORGANIZATION AND MEMBERS OF MANAGEMENT AND THE BOARD ARE STRICTLY PROHIBITED. THE ORGANIZATION SEEKS FULL TRANSPARENCY ON ALL RELATIONSHIPS. ANY POTENTIAL CONFLICTS OF INTEREST (IN FACT OR APPEARANCE) ARE DISCUSSED OPENLY AND RESOLVED IN ACCORDANCE WITH THE ORGANIZATION'S POLICIES AND PROCEDURES, WHICH ARE AS FOLLOWS. BOARD MEMBERS ARE TO DISCLOSE IN WRITING TO THE ENTIRE BOARD IF THEY, OR ANY MEMBER OF THEIR IMMEDIATE FAMILIES, OR ANY ORGANIZATION WITH WHICH THEY ARE AFFILIATED, PRESENTLY TRANSACT BUSINESS WITH THE NFXF OR MIGHT REASONABLY BE EXPECTED TO DO SO IN THE FUTURE. AN AFFILIATION WITH AN ORGANIZATION WILL BE CONSIDERED TO EXIST WHEN A BOARD MEMBER OR A MEMBER OF HIS OR HER IMMEDIATE FAMILY IS AN OFFICER, DIRECTOR, TRUSTEE, PARTNER, EMPLOYEE, OR AGENT OF THE ORGANIZATION; OR OWNS FIVE PERCENT OF THE VOTING STOCK OR A CONTROLLING INTEREST IN THE ORGANIZATION; OR HAS ANY SUBSTANTIAL INTEREST OR DEALINGS WITH THE ORGANIZATION. BOARD MEMBERS WITH SUCH RELATIONSHIPS WILL NOT BE ELIGIBLE TO VOTE ON MATTERS DIRECTLY PERTAINING TO THE BUSINESS TO BE TRANSACTED WITH THE IDENTIFIED PERSON OR ORGANIZATION OR ON ISSUES THAT MAY RESULT IN ANY BENEFIT INURING TO THE BENEFIT OF THE IDENTIFID PERSON OR ORGANIZATION. MINUTES OF APPROPRIATE MEETINGS ARE TO REFLECT THAT SUCH DISCLOSURE WAS MADE, THAT SUCH BOARD MEMBER ABSTAINED FROM VOTING, AND THAT SUCH BOARD MEMBER WAS NOT COUNTED FOR THE PURPOSE OF DETERMINING A QUORUM. THE FOREGOING REQUIREMENTS, HOWEVER, ARE NOT TO BE CONSTRUED TO PREVENT A PARTICULAR BOARD MEMBER FROM BRIEFLY STATING HIS/HER POSITION ON THE MATTER, NOR FROM ANSWERING PERTINENT QUESTIONS FROM OTHER DIRECTORS BY REASON OF THE FACT THAT PERSONAL KNOWLEDGE OF THE MATTER MAY BE OF ASSISTANCE TO THE OTHER BOARD MEMBERS IN REACHING THEIR DECISION. BOARD MEMBERS MAINTAINING NO SUCH RELATIONSHIPS WILL ATTEST TO THAT FACT IN WRITING AND AGREE TO NOTIFY THE BOARD ABOUT THEIR STATUS CHANGE. FORM 990, PART VI, SECTION B, LINE 15A MEMBERS OF THE BOARD OF DIRECTORS REVIEW THE COMPENSATION OF ALL HIGH-LEVEL PERSONNEL PERIODICALLY IN ACCORANCE WITH IRS RULES AND REGULATIONS. EFFORTS ARE MADE TO SECURE COMPENSATION DATA FROM INDUSTRY SOURCES IN ORDER TO DETERMINE COMPETITIVENESS AND APPROPRIATENESS OF SALARIES AND ALL RELATED BENEFITS. ALL DECISIONS ARE THEN DOCUMENTED IN PERSONNEL FILES. COMPENSATION OF OTHER HIGH-LEVEL PERSONNEL AND KEY EMPLOYEES IS REVIEWED PERIODICALLY BY MEMBERS OF MANAGEMENT. EFFORTS ARE MADE TO SECURE COMPENSATION DATA FROM INDUSTRY SOURCES IN ORDER TO DETERMINE COMPETITIVENESS AND APPROPRIATENESS OF SALARIES AND ALL RELATED BENEFITS. ALL DECISIONS ARE THEN DOCUMENTED IN PERSONNEL FILES. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS AND CONFLICT OF INTEREST POLICY ARE PROVIDED UPON REQUEST. ANNUAL AUDITED FINANCIAL STATEMENTS ARE PUBLISHED ON THE ORGANIZATION'S WEBSITE. FORM 990, PART IX, LINE 11G CONSULTING: PROGRAM SERVICE EXPENSES 519,864. MANAGEMENT AND GENERAL EXPENSES 10,180. FUNDRAISING EXPENSES 4,960. TOTAL EXPENSES 535,004. FORM 990, PART XII, LINE 2C THIS PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.