2017-08-21T16:57:15-05:00 2016-12-31 582676261 Rogers & Company PLLC 8300 Boone Boulevard Suite 600 Vienna VA 22182 990 2016-01-01 840960471 The National Fragile X Foundation NATI 8006888765 2100 M Street NW No 170 Washington DC 200371233 Tony Ferlenda CEO 8006888765 2017-08-21 1 Nicole M Prince CPA P01315245 7038930300 2017-08-21 72.214.41.82 2017-08-21 17:57:07 ED P 6C9B1A35775087DBDB8A6D25ECA509C7F6C27838 6C9B1A35775087DBDB8A6D25ECA509C7F6C27838 2016 2021-01-29 14:40:06Z Tony Ferlenda 2100 M Street NW No 170 Washington DC 200371233 2053721 0 X www.fragilex.org X 2001 CA The National Fragile X Foundation unites the Fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for Fragile X. 16 16 8 70 0 0 1078697 1456833 126079 487266 -2896 797 51058 7900 1252938 1952796 19135 67491 0 0 590917 622351 0 0 78568 661906 892383 1271958 1582225 -19020 370571 677132 1067742 320023 60205 357109 1007537 X Fragile X is a family of genetic conditions which can impact individuals and families in various ways. These genetic conditions are related in that they are all caused by changes in the same DNA material known as the FMR1 gene. 0 0 776962 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 & adult issues. The NFXF organizes regional,international educational conferences & webinars for families and professionals about FX disorders to help families cope and overcome the daily challenges of living with FX. 330298 67491 Research grants: The NFXF funds two major research strategies - The NFXF Biobank whereby biological samples 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. 90282 Community Support Network: The NFXF organizes and supports a vibrant & dedicated network of volunteer-led chapters across the US. These chapters deliver the NFXF mission on a local level. 51879 Public Policy and Legislative Advocacy: The NFXF conducts coordinated efforts to procure, maintain & grow federal research funding for FX research & programs through our annual advocacy fly in events. We also seek support of legislation that will benefit all individuals living with FX. 51879 1249421 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 10 0 1 8 1 0 0 0 0 1 1 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 1 0 CA DC X Karen Goodwin 2027476202 1861 International Drive No 200 McLean VA 22102 Brian Silver President 5.00 X X 0 0 0 Larry Krantz Vice President 5.00 X X 0 0 0 Emily Mack Secretary 5.00 X X 0 0 0 Mike Makris Treasurer 5.00 X X 0 0 0 Evan Davis Board Member 2.00 X 0 0 0 Paula Fasciano Board Member 2.00 X 0 0 0 Brenda Finucane MS LGC Board Member 2.00 X 0 0 0 Mark Gershenson Board Member 2.00 X 0 0 0 Jimi Grande Board Member 2.00 X 0 0 0 Howard Pollock Board Member 2.00 X 0 0 0 Rick Reynolds Board Member 2.00 X 0 0 0 Rajat Sarup Board Member 2.00 X 0 0 0 Don Schalk Board Member 2.00 X 0 0 0 Stephanie Sherman Board Member 2.00 X 0 0 0 Jay Souder Board Member 2.00 X 0 0 0 Carolyn Tomberlin Board Member 2.00 X 0 0 0 Tony Ferlenda CEO 40.00 X 135971 0 9096 Linda Sorensen COO 40.00 X 91791 0 0 227762 0 9096 1 0 0 0 0 165729 1291104 46971 1456833 Conferences and Meetin 900099 425260 303485 121775 Membership Dues 900099 21420 21420 Educational Sales 452000 21256 21256 Service Fees 900999 19330 19330 487266 797 797 100925 165729 100925 0 Other 900099 7900 7900 7900 1952796 373391 0 122572 X 58000 58000 9491 9491 236858 189486 35529 11843 337818 270254 50673 16891 7442 5954 1116 372 40233 32186 6035 2012 54670 54670 210893 183670 27223 41920 41920 50824 35330 14738 756 38237 17358 16814 4065 85240 63356 21884 380558 372990 7568 5200 5200 10302 8242 1545 515 Miscellaneous 14539 3104 11241 194 1582225 1249421 254236 78568 181566 94244 311378 607918 311213 117524 47820 58337 2623 24694 20770 8327 3924 677132 1067742 40166 60205 279857 0 320023 60205 X 135539 786974 221570 220563 357109 1007537 677132 1067742 370571 279857 0 X 0 1 X 1 0 X 944092 1291012 992118 1086993 1409862 5724077 944092 1291012 992118 1086993 1409862 5724077 771844 4952233 990 1634 5585 -2896 797 6110 7900 7900 5738087 2185318 0.86300 0.82350 X 0.82350 0.00080 Schedule A, Part II, Line 10, Explanation of Other Income: Miscellaneous income - 2016 Amount: $ 7,900. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 24694 20770 3924 3924 X 2006750 53954 53954 1952796 0 1952796 1636179 53954 53954 1582225 0 1582225 Part X, Line 2: Management has evaluated National Fragile X's tax positions and concluded that National Fragile X's financial statements do not include any uncertain tax positions. Part XI, Line 2d - Other Adjustments: Direct benefits 53,954. Part XII, Line 2d - Other Adjustments: Direct benefits 53,954. Silent auction 35656 2935 32721 32721 Live auction 20900 6650 14250 14250 210098 156144 53954 53954 266654 165729 100925 46971 53954 100925 0 1 Summer Student Fellowship 4 9491 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 33 11650 X 325 X 13889 X 14 3235 X 9 837 X Tickets/events 13 17035 0 1 0 Form 990, Part VI, Section B, line 11b All board members receive a copy of the 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 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 is reproduced here: 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 of 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 identified person or organization. Minutes or 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 or other directors by reason of the fact that personal knowledge of on 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 should their status change. Form 990, Part VI, Section B, line 15 Members of the board of directors review the compensation of all high-level personnel periodically in accordance 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 Audited financials and 990 are posted on website annually. Form 990, Part IX, line 11g Contracted labor: Program service expenses 117,000. Management and general expenses 0. Fundraising expenses 0. Total expenses 117,000. Other: Program service expenses 47,526. Management and general expenses 27,223. Fundraising expenses 0. Total expenses 74,749. Advocacy: Program service expenses 19,144. Management and general expenses 0. Fundraising expenses 0. Total expenses 19,144.