2019-04-25T16:21:55-05:00 2018-12-31 470900880 CALIBRE CPA GROUP PLLC 7501 WISCONSIN AVENUE SUITE 1200W BETHESDA MD 20814 990 2018-01-01 840960471 THE NATIONAL FRAGILE X FOUNDATION NATI 8006888765 1861 INTERNATIONAL DRIVE NO 200 MCLEAN VA 22102 LINDA SORENSEN EXECUTIVE DIRECTOR 8006888765 2019-04-25 1 STEVEN C DARR CPA CMA P01324904 2023319880 38.100.43.98 2019-04-25 17:21:24 ED P 0D07D9F5073B73617365FE97D89C0FC39718B347 2D5B0BD3402E39B7C704900C7FC251DEED649B44 2018 2019-02-21 02:37:17Z LINDA SORENSEN 1861 INTERNATIONAL DRIVE NO 200 MCLEAN VA 22102 1820669 0 X WWW.FRAGILEX.ORG X 2001 CA TO PROVIDE UNWAVERING SUPPORT FOR EVERY FAMILY AFFECTED BY FRAGILE X WHILE RELENTLESSLY PURSUING A CURE. 16 16 10 50 0 0 1734963 1261367 12840 513659 1800 2579 3250 2875 1752853 1780480 81328 59375 0 0 776996 648101 0 0 150823 795782 1033910 1654106 1741386 98747 39094 1227026 1243520 117684 112117 1109342 1131403 THE NATIONAL FRAGILE X FOUNDATION UNITES THE FRAGILE X COMMUNITY TO ENRICH LIVES THROUGH EDUCATIONAL AND EMOTIONAL SUPPORT, PROMOTES PUBLIC AND PROFESSIONAL AWARENESS, AND ADVANCES RESEARCH TOWARD IMPROVED TREATMENTS AND A CURE FOR FRAGILE X. 0 0 1302370 11025 428451 EDUCATION AND SUPPORT - THE NFXF PROVIDES PERSONALIZED SUPPORT, INFORMATION 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 REGIONAL, INTERNATIONAL EDUCATIONAL CONFERENCES AND WEBINARS FOR FAMILIES AND PROFESSIONALS ABOUT FX DISORDERS TO HELP FAMILIES COPE AND OVERCOME THE DAILY CHALLENGES OF LIVING WITH FX. 48350 48350 RESEARCH GRANTS - THE NFXF FUNDS TWO MAJOR RESEARCH STRATEGIES. THE NFXF BIOBANK, WHEREBY BIOLOGICAL SAMPLES ARE COLLECTED FROM VOLUNTEER PARTICIPANTS LIVING WITH FRAGILE X. THESE SAMPLES, COMBINED WITH CLINICAL DATA FROM THESE SAME PARTICIPANTS WILL BE USED TO CREATE UNIQUE NFXF RESEARCH READY MATERIALS. RESEARCHERS CAN THEN USE THESE MATERIALS TO IDENTIFY CORRELATIONS BETWEEN BEHAVIOR AND MEDICAL CONDITIONS, KNOWN AS BIOMARKERS, ALLOWING PHARMACEUTICALS TO TARGET THE UNDERLYING BIOLOGICAL MECHANISM FOR TREATMENT OR CURES. THE NFXF ALSO FUNDS SUMMER STUDENT FELLOWSHIPS TO PROMOTE THE DEVELOPMENT OF YOUNGER SCIENTISTS IN THE FIELD. 42516 COMMUNITY SUPPORT NETWORK - THE NFXF ORGANIZES AND SUPPORTS A VIBRANT AND DEDICATED NETWORK OF VOLUNTEER-LED CHAPTERS ACROSS THE U.S. THESE CHAPTERS DELIVER THE NFXF MISSION ON A LOCAL LEVEL. A WRITTEN CHAPTER AGREEMENT WAS DEVELOPED TO FORMALIZE AFFILIATE VOLUNTEER GROUPS AS NFXF CHAPTERS EFFECTIVE JANUARY 2018. 1393236 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 1 0 0 0 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 6 0 1 10 1 0 0 0 0 0 0 0 0 0 0 0 0 X 16 16 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 0 0 CA X X NEOSYSTEMS 2027476202 1861 INTERNATIONAL DRIVE SUITE 200 MCLEAN VA 22102 EMILY BORG DIRECTOR 1.00 X 0 0 0 EVAN DAVIS DIRECTOR 1.00 X 0 0 0 PAULA FASCIANO DIRECTOR 1.00 X 0 0 0 BRENDA FINUCANE DIRECTOR 1.00 X 0 0 0 ABBY GAUNT DIRECTOR 1.00 X 0 0 0 JOE GARERA DIRECTOR 1.00 X 0 0 0 LARRY KRANTZ VICE-PRESIDENT 2.00 X X 0 0 0 EMILY MACK SECRETARY 2.00 X X 0 0 0 CHARLES MITCHELL DIRECTOR 1.00 X 0 0 0 HOWARD POLLOCK DIRECTOR 1.00 X 0 0 0 RAJAT SARUP TREASURER 2.00 X X 0 0 0 DON SCHALK DIRECTOR 1.00 X 0 0 0 STEPHANIE SHERMAN DIRECTOR 1.00 X 0 0 0 BRIAN SILVER PAST PRESIDENT 1.00 X 0 0 0 JAY SOUDER PRESIDENT 5.00 X X 0 0 0 CAROLYN TOMBERLIN DIRECTOR 1.00 X 0 0 0 LINDA SORENSEN EXECUTIVE DIRECTOR 40.00 X 165480 0 0 165480 0 0 1 0 1 0 0 25325 1236042 30674 1261367 CONFERENCES AND MEETIN 900099 483855 385025 98830 OTHER PROGRAM REVENUE 900099 22203 22203 SERVICE FEES 900099 7601 7601 513659 2851 2851 272 -272 -272 -272 29170 25325 39917 -10747 -10747 13622 0 13622 13622 1780480 428451 0 90662 X 45167 45167 14208 14208 165480 132384 16548 16548 415321 343455 12736 59130 25322 20746 1277 3299 41978 34391 2117 5470 1272 1272 79144 79144 417706 321453 43726 52527 28803 20082 8721 25955 21264 2345 2346 45359 43103 1128 1128 324183 324183 7087 5670 708 709 15095 15095 CSN GROUPS 42516 42516 BANK AND CREDIT CARD FE 26011 16153 192 9666 MISCELLANEOUS 20779 8461 12318 1741386 1393236 197327 150823 621377 623452 155483 157025 392596 320732 31341 74641 10831 15705 63414 11449 15398 51965 1227026 1243520 102739 103124 14945 1050 0 7943 117684 112117 X 881046 723728 228296 407675 1109342 1131403 1227026 1243520 39094 -17033 0 X 0 1 X 1 0 X 992118 1078697 1409862 1734963 1261376 6477016 992118 1078697 1409862 1734963 1261376 6477016 127648 6349368 5585 209 797 1800 2851 11242 7900 3250 11150 6499408 1615415 0.97690 0.96950 X 12162 4470 7692 51252 6979 44273 51965 HELD FOR AFFILIATES 7943 7943 X 1789995 9515 9515 1780480 0 1780480 1750901 9515 9515 1741386 0 1741386 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: LOSS ON DISPOSAL OF PROPERTY AND EQUIPMENT 272. COSTS OF SPECIAL FUNDRAISING EVENTS 9,243. PART XII, LINE 2D - OTHER ADJUSTMENTS: LOSS ON DISPOSAL OF PROPERTY AND EQUIPMENT 272. COSTS OF SPECIAL FUNDRAISING EVENTS 9,243. SILENT AUCTION 23220 23220 24724 3938 LIVE AUCTION 31275 25325 5950 5950 5305 54495 25325 29170 30674 9243 39917 -10747 1 SCHOLARSHIPS 6 9975 TRAVEL GRANTS 7 4233 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. X X 0 0 0 0 0 0 0 1 0 LINDA SORENSEN EXECUTIVE DIRECTOR 140480 0 25000 0 0 0 0 0 0 0 165480 0 0 0 PART I, LINE 7 LINDA SORENSEN WAS PAID A RETENTION BONUS DURING 2018 FOR COMPLETING THE INTERIM EXECUTIVE DIRECTOR POSITION THROUGH THE END OF CALENDAR YEAR 2017. THIS RETENTION BONUS WAS DETERMINED BY THE ORGANIZATION'S EXECUTIVE COMMITTEE AND APPROVED BY A VOTE OF THE FULL BOARD OF DIRECTORS. X AUCTION ITEMS 163 30674 FAIR VALUE 0 1 1 PART I, LINE 32B: THE ORGANIZATION UTILIZES A THIRD PARTY TO MANAGE BIENNIEL AUCTIONS THAT ARE CONSIDERED SPECIAL FUNDRAISING EVENTS. FORM 990, PART VI, SECTION B, LINE 11B ALL BOARD MEMBERS RECEIVE A COPY OF FORM 990 FOR REVIEW PRIOR TO FILING. 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 321,453. MANAGEMENT AND GENERAL EXPENSES 43,726. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 365,179. : PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 52,527. TOTAL EXPENSES 52,527.