2014-04-10T14:28:47-07:00 2013-12-31 Regalia & Associates CPAs 103 Town Country Dr Ste K Danville CA 94526 990 2013-01-01 840960471 THE NATIONAL FRAGILE X FOUNDATION NATI 9259389300 1615 Bonanza Street Walnut Creek CA 94596 Jeffrey Cohen Exec Director 2014-04-10 true Douglas W Regalia P00186389 9253140390 2013 2015-11-30 17:44:51Z Brad Whitus 1615 Bonanza Street 202 Walnut Creek CA 94596 1404829 false false X www.fragilex.org X 2001 CA National Fragile X 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. 13 13 10 0 944092 1292012 744609 111183 990 1634 0 1689691 1404829 133065 17315 0 533996 507195 20758 0 103774 1044608 878271 1732427 1402781 -42736 2048 653284 668769 205750 219187 447534 449582 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. false false 1026860 9790 Program ActivitiesPublic Awareness, Education and Advocacy:National Fragile X maintains an extensive web site at www.fragilex.org which contains a wealth of information regarding all aspects of genetic causes. Children whose development is affected by fragile X syndrome are eligible for special education services. The Individuals with Disabilities Education Act (IDEA), a federal law, mandates a free, appropriate public education in the least restrictive environment (that is, as much as possible with non-disabled children) for all children with special needs.A multidisciplinary evaluation of a child age three through kindergarten consists of a variety of measures to determine eligibility for special [continued on Schedule O] 66852 ConferencesNational Fragile X coordinates a variety of local, regional and international conferences. The conferences are an ideal vehicle where participants can listen to a variety of speakers and meet with professionals to gain a better understanding of current developments in the Fragile X arena. 17315 17315 Research GrantsThe National Fragile X Foundation promotes research through direct funding of basic science research and clinical research, through the support of young researchers and summer student fellowships, though legislative advocacy in Washington, DC and through the organization of a biennial international conference which brings together many of the world's leading Fragile X and genetics researchers with families impacted by Fragile X. 1111027 true true false false false false false false false false true false false false true true true false false false false true false false false false false false true false false false false false false false false false false false false true false false false false false false false false false true 21 0 true 10 true false false false false false true true false false 0 false false false false false false false false false false X 13 13 false false false false false false false true true false true true true true true true true true true true false X X Robert Miller 9259389300 1615 Bonanza St Suite 202 Walnut Creek CA 94596 Brad Whitus President 4.00 0.00 X X 0 0 0 Al Blount Treasurer 4.00 0.00 X X 0 0 0 Joey Christoff Secretary 4.00 0.00 X X 0 0 0 Michael Kelley Past President 4.00 0.00 X X 0 0 0 Jennifer Silverton Secretary 4.00 0.00 X X 0 0 0 Ted Coutilish Director 2.00 0.00 X 0 0 0 Mark Dissette Director 2.00 0.00 X 0 0 0 Jimi Grande Director 2.00 0.00 X 0 0 0 David Justus Director 2.00 0.00 X 0 0 0 Mike Makris Director 2.00 0.00 X 0 0 0 Juan-Carlos Planas Director 2.00 0.00 X 0 0 0 Brian Silver Director 2.00 0.00 X 0 0 0 Jay Souder Director 2.00 0.00 X 0 0 0 Jeffrey Cohen Exec Director 40.00 0.00 X 102080 0 0 Robert Miller Former Exec Director 40.00 0.00 X 114737 0 0 Linda Sorensen Associate Director 40.00 0.00 X 85126 0 0 301943 2 false false false 0 24733 1267279 71291 1292012 Events 101393 101393 Fees for service 9790 9790 111183 1634 1634 0 0 0 0 0 0 0 0 1404829 111183 1634 X 10150 10150 7165 7165 0 0 301943 241555 45291 15097 0 158504 126819 23776 7909 0 10195 8140 1529 526 36553 29242 5483 1828 0 1850 1850 28508 28508 0 0 0 526868 478969 27290 20609 0 9984 7987 1498 499 11738 9390 1761 587 0 28404 22723 4261 1420 39623 25385 14238 0 0 0 0 10495 10495 10116 8093 1517 506 Conference & Event Expenses 66852 66852 Fundraising and marketing 54267 54267 Program projects 38625 38625 Printing and Publications 13952 8726 5226 36989 21206 15257 526 1402781 1111027 187980 103774 178541 0 318110 577532 0 103937 46943 0 0 0 0 19871 23388 71536 53130 28901 18406 0 1424 0 0 0 2500 2500 653284 668769 25138 43506 50000 40000 90612 175681 205750 219187 X 314760 234183 132774 215399 447534 449582 653284 668769 2048 X false true X true false X 760856 864572 963430 944092 1292012 4824962 780955 646630 315726 744609 111183 2599103 0 0 0 1541811 1511202 1279156 1688701 1403195 7424065 0 271055 434745 365972 254952 575200 1901924 271055 434745 365972 254952 575200 1901924 5522141 1643 1456 927 990 1634 6650 0 1643 1456 927 990 1634 6650 0 0 1543454 1512658 1280083 1689691 1404829 7430715 0.74320 0.78830 0.00090 0.00120 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 71536 53130 18406 18406 Managed funds 175681 175681 X 1404829 1404829 1404829 1402781 1402781 1402781 Part X : FIN48 Footnote Income TaxesFinancial statement presentation follows the recommendations of ASC 740, Income Taxes. Under ASC 740, National Fragile X is required to report information regarding its exposure to various tax positions taken by National Fragile X and requires a two-step process that separates recognition from measurement. The first step is determining whether a tax position has met the recognition threshold; the second step is measuring a tax position that meets the recognition threshold. Management believes that National Fragile X has adequately evaluated its current tax positions and has concluded that as of December 31, 2013, National Fragile X does not have any uncertain tax positions for which a reserve or an accrual for a tax liability would be necessary.National Fragile X has received notification from the Internal Revenue Service and the State of California that it qualifies for tax-exempt status under Section 501(c)(3) of the Internal Revenue Code and Section 23701d of the California Revenue and Taxation Code. The exemptions are subject to periodic review by the federal and state taxing authorities and management is confident that National Fragile X continues to satisfy all federal and state statutes in order to qualify for continued tax exemption status. National Fragile X may periodically receive unrelated business income (such as sublease rental income or advertising revenue) requiring National Fragile X to file separate tax returns under federal and state statutes. Under such conditions, National Fragile X calculates and accrues the applicable taxes. true Medical Research Check disbursements Medical Research Check disbursements 2 false false false false false false Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US A budget is prepared in advance of all international funding. Expenditures are made against budget amounts and analyzed continuously by US-based management. Discussions, e-mails, and other techniques of communication are employed to ensure that funds are utilized according to the original intent. true 0 0 Research Awards 20 7165 Grantmaker's Description of How Grants are Used 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 2 66884 FMV X Software 1 4407 FMV false false false Form 990, Part III, Line 4d: Other Program Services Description OTHER PROGRAM SERVICES 4: Program Activities (continued)education and the needs of the child. All school districts must offer screenings for all children at age 3. The screening might consist of a hearing test, vision test, and language, cognitive, gross motor, and fine motor tasks. A child who fails one or more of these areas is referred for a full evaluation.Intervention varies, based upon the child's age and individual needs. Settings range from home-based programs for infants to a variety of school based classrooms. Every child eligible for special education has his or her own Individualized Family Service Plan (IFSP), for younger children, or Individualized Educational Plan (IEP), for school age children.There are some particular areas that should be addressed in planning for the education of a child with fragile X syndrome. The development of cognitive, speech and language, behavioral, sensory-motor, and academic areas can be addressed in developing the educational plan for a child affected by fragile X.Information, Referral and Support:National Fragile X provides a wealth of data regarding the genetic deficiencies relating to Fragile 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 gene changes in the same gene, called the FMR1 gene.Fragile X includes:fragile X syndrome (FXS), the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. (Sometimes referred to as mental retardation.) FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development.fragile X-associated tremor/ataxia syndrome (FXTAS), a condition which affects balance, tremor and memory in some older male gene carriers.fragile X-associated primary ovarian insufficiency (FXPOI), a problem with ovarian function which can lead to infertility and early menopause in some female gene carriers.Some gene carriers do not exhibit any of these features.Fragile X can be passed on in a family by individuals who have no apparent signs of this genetic condition. In some families a number of family members appear to be affected, whereas in other families a newly diagnosed individual may be the first family member to exhibit symptoms. Since 1984, The National Fragile X Foundation (NFXF) has been helping individuals with Fragile X, their families, and the professionals who work with them. As research into Fragile X continues, our understanding of who it affects and how it affects them will grow. The NFXF is committed to: 1) supporting and funding all efforts that will increase awareness, 2) improving education, 3) advancing research toward improved treatments and an ultimate cure, and 4) keeping the Fragile X community always well-informed about the progress of these efforts. Form 990, Part VI, Line 11b: Form 990 Review Process FORM 990 IS PREPARED BY AN OUTSIDE TAX PROFESSIONAL. THE FORM IS THEN REVIEWED BYTHE ORGANIZATION'S MANAGEMENT, A MEMBER OF THE BOARD OF DIRECTORS, AND THE EXECUTIVEDIRECTOR. THIS GROUP OF INDIVIDUALS THEN DISCUSSES THE CONTENTS OF THE RETURN WITHTHE OUTSIDE TAX PROFESSIONAL. AFTER A FULL REVIEW (WITH MODIFICATIONS WHERENECESSARY), THE FINAL VERSION OF THE TAX RETURN IS PROVIDED TO ALL MEMBERS OF THE ORGANIZATION'S VOTING BODY. A REPRESENTATIVE OF MANAGEMENT AUTHORIZES THE FINAL FORM 990 WHICH IS THEN E-FILED WITH THE INTERNAL REVENUE SERVICE. Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts MEMBERS OF THE BOARD OF DIRECTORS REVIEW ALL POTENTIAL CONFLICTS OF INTEREST ATLEAST 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 (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 or controlling interest in the organization; or has any other 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 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 be construed to prevent a particular board member from briefly stating his/her position on the matter, nor from answering pertinent questions of other directors by reason of the fact that personal knowledge 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, Line 15a: Compensation Review & Approval Process - CEO, Top Management MEMBERS OF THE BOARD OF DIRECTORS REVIEW THE COMPENSATION OF ALL HIGH-LEVEL PERSONNEL ANNUALLY 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. EVERY EFFORT IS MADE TO ENSURE THAT THE PROCESS IS THOROUGH AND TRANSPARENT IN ACCORDANCE WITH IRS GUIDELINES AND THE ORGANIZATION'S POLICIES AND PROCEDURES. Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees COMPENSATION OF OTHER HIGH-LEVEL PERSONNEL AND KEY EMPLOYEES IS REVIEWED AT LEAST ANNUALLY 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, Line 19: Other Organization Documents Publicly Available ALL OF THE ORGANIZATION'S GOVERNING DOCUMENTS, FINANCIAL STATEMENTS AND OTHER LEGALFILINGS ARE MAINTAINED IN A SECURE ENVIRONMENT AND HELD AVAILABLE FOR INSPECTION BYTAX AUTHORITIES AND THE GENERAL PUBLIC. TAX RETURNS ARE POSTED ANNUALLY TOWWW.GUIDESTAR.ORG (WHERE IT IS AVAILABLE FOR VIEWING AS AN ELECTRONIC COPY) AND ARE ALSO AVAILABLE AT THE ORGANIZATION'S OFFICE IN WALNUT CREEK, CALIFORNIA (FOR A PHYSICAL INSPECTION).