Department of the Treasury Internal Revenue Service
Public Charity Status and Public Support
Complete if the organization is a section 501(c)(3) organization or a section
4947(a)(1) nonexempt charitable trust.
Attach to Form 990 or Form 990-EZ. See separate instructions. Information about Schedule A (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
THE NATIONAL FRAGILE X FOUNDATION
Employer identification number
84-0960471
Part I
Reason for Public Charity Status
(All organizations must complete this part.) See instructions.
The organization is not a private foundation because it is: (For lines 1 through 11, check only one box.)
1
2
3
4
5
section 170(b)(1)(A)(iv). (Complete Part II.)
6
7
8
9
receipts from activities related to its exempt functions—subject to certain exceptions, and (2) no more than 331/3% of
its support from gross investment income and unrelated business taxable income (less section 511 tax) from businesses
acquired by the organization after June 30, 1975. See section 509(a)(2). (Complete Part III.)
10
11
e
By checking this box, I certify that the organization is not controlled directly or indirectly by one or more disqualified persons other than foundation managers and other than one or more publicly supported organizations described in section 509(a)(1) or section 509(a)(2).
f
If the organization received a written determination from the IRS that it is a Type I, Type II, or Type III supporting organization, check this box
..................................................
g
Since August 17, 2006, has the organization accepted any gift or contribution from any of the following persons?
(i) A person who directly or indirectly controls, either alone or together with persons described in (ii)
Yes
No
and (iii) below, the governing body of the supported organization?
................
11g(i)
(ii)
A family member of a person described in (i) above?
......................
11g(ii)
(iii)
A 35% controlled entity of a person described in (i) or (ii) above?
................
11g(iii)
h
Provide the following information about the supported organization(s).
(i) Name of supported organization
(ii) EIN
(iii) Type of organization (described on lines 1- 9 above or IRC section (see instructions))
(iv) Is the organization in col. (i) listed in your governing document?
(v) Did you notify the organization in col. (i) of your support?
(vi) Is the organization in col. (i) organized in the U.S.?
(vii) Amount of monetary support
Yes
No
Yes
No
Yes
No
Total
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990EZ.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2013
Schedule A (Form 990 or 990-EZ) 2013
Page 2
Part II
Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi) (Complete only if you checked the box on line 5, 7, or 8 of Part I or if the
organization failed to qualify under Part III. If the organization fails to
qualify under the tests listed below, please complete Part III.)
Section A. Public Support
Calendar year (or fiscal year beginning in)
(a) 2009
(b) 2010
(c) 2011
(d) 2012
(e) 2013
(f) Total
1
Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") ....
2
Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.......
3
The value of services or facilities furnished by a governmental unit to the organization without charge..
4
Total. Add lines 1 through 3
5
The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included
on line 1 that exceeds 2% of the amount shown on line 11, column (f)..
6
Public support. Subtract line 5 from line 4.
Section B. Total Support
Calendar year
(or fiscal year beginning in)
(a) 2009
(b) 2010
(c) 2011
(d) 2012
(e) 2013
(f) Total
7
Amounts from line 4..
8
Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources...
9
Net income from unrelated business activities, whether or not the business is regularly carried on..
10
Other income. Do not include gain or loss from the sale of capital assets (Explain in Part IV.)..
11
Total support (Add lines 7 through 10).
12
Gross receipts from related activities, etc. (see instructions)
..................
12
13
First five years.
If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a 501(c)(3) organization,
check this box and stop here.................................................
Section C. Computation of Public Support Percentage
14
Public support percentage for 2013 (line 6, column (f) divided by line 11, column (f))
.........
14
15
Public support percentage for 2012 Schedule A, Part II, line 14
...............
15
16a
33 1/3% support test—2013.
If the organization did not check the box on line 13, and line 14 is 33 1/3% or more, check this box
and stop here. The organization qualifies as a publicly supported organization
.......................
b
33 1/3% support test—2012.
If the organization did not check a box on line 13 or 16a, and line 15 is 33 1/3% or more, check this
box and stop here. The organization qualifies as a publicly supported organization
.....................
17a
10%-facts-and-circumstances test—2013.
If the organization did not check a box on line 13, 16a, or 16b, and line 14
is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here. Explain
in Part IV how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported
organization
.....................................................
b
10%-facts-and-circumstances test—2012.
If the organization did not check a box on line 13, 16a, 16b, or 17a, and line
15 is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here.
Explain in Part IV how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported organization
................................................
18
Private foundation.
If the organization did not check a box on line 13, 16a, 16b, 17a, or 17b, check this box and see
instructions
.....................................................
Schedule A (Form 990 or 990-EZ) 2013
Schedule A (Form 990 or 990-EZ) 2013
Page 3
Part III
Support Schedule for Organizations Described in Section 509(a)(2) (Complete only if you checked the box on line 9 of Part I or if the organization
failed to qualify under Part II. If the organization fails to qualify under
the tests listed below, please complete Part II.)
Section A. Public Support
Calendar year (or fiscal year beginning in)
(a) 2009
(b) 2010
(c) 2011
(d) 2012
(e) 2013
(f) Total
1
Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .
760,856
864,572
963,430
944,092
1,292,012
4,824,962
2
Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose......
780,955
646,630
315,726
744,609
111,183
2,599,103
3
Gross receipts from activities that are not an unrelated trade or business under section 513..
0
4
Tax revenues levied for the organization's benefit and either paid to or expended on its behalf...
0
5
The value of services or facilities furnished by a governmental unit to the organization without charge..
0
6
Total. Add lines 1 through 5.
1,541,811
1,511,202
1,279,156
1,688,701
1,403,195
7,424,065
7a
Amounts included on lines 1, 2, and 3 received from disqualified persons...
0
b
Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year.
271,055
434,745
365,972
254,952
575,200
1,901,924
c
Add lines 7a and 7b..
271,055
434,745
365,972
254,952
575,200
1,901,924
8
Public support (Subtract line 7c from line 6.)
5,522,141
Section B. Total Support
Calendar year (or fiscal year beginning in)
(a) 2009
(b) 2010
(c) 2011
(d) 2012
(e) 2013
(f) Total
9
Amounts from line 6...
1,541,811
1,511,202
1,279,156
1,688,701
1,403,195
7,424,065
10a
Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..
1,643
1,456
927
990
1,634
6,650
b
Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.
0
c
Add lines 10a and 10b.
1,643
1,456
927
990
1,634
6,650
11
Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on.
0
12
Other income. Do not include gain or loss from the sale of capital assets (Explain in Part IV.)
..
0
13
Total support. (Add lines 9, 10c, 11, and 12.)..
1,543,454
1,512,658
1,280,083
1,689,691
1,404,829
7,430,715
14
First five years.
If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a 501(c)(3) organization,
check this box and stop here.............................................
Section C. Computation of Public Support Percentage
15
Public support percentage for 2013 (line 8, column (f) divided by line 13, column (f))
.........
15
74.320 %
16
Public support percentage from 2012 Schedule A, Part III, line 15
...............
16
78.830 %
Section D. Computation of Investment Income Percentage
17
Investment income percentage for 2013 (line 10c, column (f) divided by line 13, column (f))
......
17
0.090 %
18
Investment income percentage from 2012 Schedule A, Part III, line 17
.............
18
0.120 %
19a
33 1/3% support tests—2013.
If the organization did not check the box on line 14, and line 15 is more than 33 1/3%, and line 17 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization
........
b
33 1/3% support tests—2012.
If the organization did not check a box on line 14 or line 19a, and line 16 is more than 33 1/3% and line 18 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization
.....
20
Private foundation.
If the organization did not check a box on line 14, 19a, or 19b, check this box and see instructions
.....
Schedule A (Form 990 or 990-EZ) 2013
Schedule A (Form 990 or 990-EZ) 2013
Page 4
Part IV
Supplemental Information.
Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; and Part III, line 12. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
Explanation
Schedule A (Form 990 or 990-EZ) 2013
Additional Data
Software ID:
13000170
Software Version:
2013v3.1
-
TIN:
SCHEDULE O (Form 990 or 990-EZ)
Department of the Treasury Internal Revenue Service
Supplemental Information to Form 990 or 990-EZ
Complete to provide information for responses to specific questions on
Form 990 or to provide any additional information.
Attach to Form 990 or 990-EZ.
Information about Schedule O (Form 990 or 990-EZ) and its instructions is at
www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
THE NATIONAL FRAGILE X FOUNDATION
Employer identification number
84-0960471
Return Reference
Explanation
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).
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.