Form
** PUBLIC DISCLOSURE COPY **
990
A For the 2011 calendar year, or tax year beginning
Address change Name change Initial return Terminated Amended return Application pending
Open to Public Inspection
and ending
C Name of organization
Check if applicable:
2011
Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except black lung benefit trust or private foundation) | The organization may have to use a copy of this return to satisfy state reporting requirements.
Department of the Treasury Internal Revenue Service
B
OMB No. 1545-0047
Return of Organization Exempt From Income Tax
D Employer identification number
Spina Bifida Association of America Doing Business As Number and street (or P.O. box if mail is not delivered to street address)
4590 Macarthur Boulevard, NW
58-1342181 Room/suite E Telephone number
250
City or town, state or country, and ZIP + 4
G
Activities & Governance
20007 H(a) Is this a group return F Name and address of principal officer:Cindy Brownstein Yes X No for affiliates? same as C above H(b) Are all affiliates included? Yes No ) § (insert no.) 501(c) ( 4947(a)(1) or 527 I Tax-exempt status: X 501(c)(3) If "No," attach a list. (see instructions) H(c) Group exemption number | J Website: | www.sbaa.org Trust Association Other | K Form of organization: X Corporation L Year of formation: 1973 M State of legal domicile: WI Part I Summary 1 Briefly describe the organization's mission or most significant activities: To promote the prevention of Spina Bifida and enhance the lives of all affected. 2 3 4 5 6 7a b
Washington, DC
800-621-3141 3,794,054.
Gross receipts $
Check this box | if the organization discontinued its operations or disposed of more than 25% of its net assets. 3 Number of voting members of the governing body (Part VI, line 1a) ~~~~~~~~~~~~~~~~~~~~ 4 Number of independent voting members of the governing body (Part VI, line 1b) ~~~~~~~~~~~~~~ 5 Total number of individuals employed in calendar year 2011 (Part V, line 2a) ~~~~~~~~~~~~~~~~ 6 Total number of volunteers (estimate if necessary) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Total unrelated business revenue from Part VIII, column (C), line 12 ~~~~~~~~~~~~~~~~~~~~ 7a Net unrelated business taxable income from Form 990-T, line 34 •••••••••••••••••••••• 7b
Net Assets or Fund Balances
Expenses
Revenue
Prior Year
12 12 0 62 30,898. 10,931. Current Year
8 9 10 11 12 13 14 15 16a
2,465,740. 461,329. 16,857. 16,975. 2,960,901. 124,680. 0. 1,214,457. 0.
2,988,311. 416,939. 9,569. 8,484. 3,423,303. 219,750. 0. 1,309,004. 0.
17 Other expenses (Part IX, column (A), lines 11a-11d, 11f-24e) ~~~~~~~~~~~~~ 18 Total expenses. Add lines 13-17 (must equal Part IX, column (A), line 25) ~~~~~~~ 19 Revenue less expenses. Subtract line 18 from line 12 ••••••••••••••••
1,462,845. 2,801,982. 158,919.
1,608,579. 3,137,333. 285,970.
Contributions and grants (Part VIII, line 1h) ~~~~~~~~~~~~~~~~~~~~~ Program service revenue (Part VIII, line 2g) ~~~~~~~~~~~~~~~~~~~~~ Investment income (Part VIII, column (A), lines 3, 4, and 7d) ~~~~~~~~~~~~~ Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) ~~~~~~~~ Total revenue - add lines 8 through 11 (must equal Part VIII, column (A), line 12) ••• Grants and similar amounts paid (Part IX, column (A), lines 1-3) ~~~~~~~~~~~ Benefits paid to or for members (Part IX, column (A), line 4) ~~~~~~~~~~~~~ Salaries, other compensation, employee benefits (Part IX, column (A), lines 5-10) ~~~ Professional fundraising fees (Part IX, column (A), line 11e)~~~~~~~~~~~~~~ 434,609. | b Total fundraising expenses (Part IX, column (D), line 25)
Beginning of Current Year 20 Total assets (Part X, line 16) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 21 Total liabilities (Part X, line 26) ~~~~~~~~~~~~~~~~~~~~~~~~~~~ 22 Net assets or fund balances. Subtract line 21 from line 20 ••••••••••••••
Part II
1,801,478. 207,671. 1,593,807.
End of Year
2,161,421. 289,920. 1,871,501.
Signature Block
Under penalties of perjury, I declare that I have examined this return, including accompanying schedules and statements, and to the best of my knowledge and belief, it is true, correct, and complete. Declaration of preparer (other than officer) is based on all information of which preparer has any knowledge. Sign Here
= =
Signature of officer Type or print name and title
Print/Type preparer's name
Paid Preparer Use Only
Date
Cindy Brownstein, President and CEO Preparer's signature
Frank H. Smith Raffa, P.C. Firm's name 1899 L Street NW, Suite 900 Firm's address Washington, DC 20036
9 9
Date
06/11/12
Check if self-employed
Firm's EIN
9
PTIN
P00639053 52-1511275
202-822-5000 X Yes No May the IRS discuss this return with the preparer shown above? (see instructions) ••••••••••••••••••••• 132001 01-23-12 LHA For Paperwork Reduction Act Notice, see the separate instructions. Form 990 (2011) Phone no.
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Spina Bifida Association of America Part III Statement of Program Service Accomplishments
Form 990 (2011)
1
58-1342181
To provide information related to the birth defect of Spina Bifida and its related conditions, including the areas of medicine, education, legislation and financial support; to help fund research into the causes, effects and treatment of Spina Bifida; to encourage the
4a
4b
(Code:
4c
(Code:
4d
Other program services (Describe in Schedule O.) 965,299. including grants of $ (Expenses $ 2,507,681. Total program service expenses J
3 4
4e
X
Check if Schedule O contains a response to any question in this Part III ••••••••••••••••••••••••••••• Briefly describe the organization's mission:
Did the organization undertake any significant program services during the year which were not listed on the prior Form 990 or 990-EZ? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Yes If "Yes," describe these new services on Schedule O. Did the organization cease conducting, or make significant changes in how it conducts, any program services?~~~~~~ Yes If "Yes," describe these changes on Schedule O. Describe the organization's program service accomplishments for each of its three largest program services, as measured by expenses. Section 501(c)(3) and 501(c)(4) organizations and section 4947(a)(1) trusts are required to report the amount of grants and allocations to others, the total expenses, and revenue, if any, for each program service reported. 699,883. including grants of $ 106. ) (Revenue $ (Code: ) (Expenses $
2
Page 2
X
No
X
No
Awareness Campaign: The Spina Bifida Association's Awareness Campaign focuses on informing communities across the country about Spina Bifida, its impact on the individual and families and how taking the B-vitamin folic acid everyday can help reduce the risk. Presentations and media outreach efforts reached over 10.5 million people.
447,074. including grants of $ 366,900. ) (Expenses $ ) (Revenue $ Annual Conference: Each year, the Spina Bifida Association holds an Annual Conference that brings leaders in the disciplines of urology, orthopedics, neurosurgery and neurology, psychology, pediatrics, education and childhood development to provide the most up-to-date information to adults living with Spina Bifida and parents of children and adolescents alike. Over 865 people from over 20 states participated in the Conference.
395,425. including grants of $ 60,100. ) (Revenue $ ) (Expenses $ Chapter Development: The Spina Bifida Association promotes the growth and development of its 24 Chapters through technical assistance to assist them in capacity building, communications, programmatic resources and grants
132002 02-09-12
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159,544.)
(Revenue $
)
)
)
19,141.) Form 990 (2011)
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2 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America Part IV Checklist of Required Schedules
Form 990 (2011)
58-1342181
Page 3 Yes
Is the organization described in section 501(c)(3) or 4947(a)(1) (other than a private foundation)? If "Yes," complete Schedule A ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Is the organization required to complete Schedule B, Schedule of Contributors? ~~~~~~~~~~~~~~~~~~~~~~
1 2 3 4 5 6 7 8 9 10 11 a b c d e f 12a b 13 14a b
15 16
Did the organization engage in direct or indirect political campaign activities on behalf of or in opposition to candidates for public office? If "Yes," complete Schedule C, Part I ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Section 501(c)(3) organizations. Did the organization engage in lobbying activities, or have a section 501(h) election in effect during the tax year? If "Yes," complete Schedule C, Part II ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Is the organization a section 501(c)(4), 501(c)(5), or 501(c)(6) organization that receives membership dues, assessments, or similar amounts as defined in Revenue Procedure 98-19? If "Yes," complete Schedule C, Part III ~~~~~~~~~~~~~~ Did the organization maintain any donor advised funds or any similar funds or accounts for which donors have the right to provide advice on the distribution or investment of amounts in such funds or accounts? If "Yes," complete Schedule D, Part I Did the organization receive or hold a conservation easement, including easements to preserve open space, the environment, historic land areas, or historic structures? If "Yes," complete Schedule D, Part II~~~~~~~~~~~~~~ Did the organization maintain collections of works of art, historical treasures, or other similar assets? If "Yes," complete Schedule D, Part III ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization report an amount in Part X, line 21; serve as a custodian for amounts not listed in Part X; or provide credit counseling, debt management, credit repair, or debt negotiation services? If "Yes," complete Schedule D, Part IV ~~ Did the organization, directly or through a related organization, hold assets in temporarily restricted endowments, permanent endowments, or quasi-endowments? If "Yes," complete Schedule D, Part V ~~~~~~~~~~~~~~~~~~~~~~~~ If the organization's answer to any of the following questions is "Yes," then complete Schedule D, Parts VI, VII, VIII, IX, or X as applicable. Did the organization report an amount for land, buildings, and equipment in Part X, line 10? If "Yes," complete Schedule D, Part VI ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization report an amount for investments - other securities in Part X, line 12 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VII ~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization report an amount for investments - program related in Part X, line 13 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIII ~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization report an amount for other assets in Part X, line 15 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part IX ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization report an amount for other liabilities in Part X, line 25? If "Yes," complete Schedule D, Part X ~~~~~~ Did the organization's separate or consolidated financial statements for the tax year include a footnote that addresses the organization's liability for uncertain tax positions under FIN 48 (ASC 740)? If "Yes," complete Schedule D, Part X ~~~~ Did the organization obtain separate, independent audited financial statements for the tax year? If "Yes," complete Schedule D, Parts XI, XII, and XIII ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Was the organization included in consolidated, independent audited financial statements for the tax year? If "Yes," and if the organization answered "No" to line 12a, then completing Schedule D, Parts XI, XII, and XIII is optional~~~ Is the organization a school described in section 170(b)(1)(A)(ii)? If "Yes," complete Schedule E ~~~~~~~~~~~~~~ Did the organization maintain an office, employees, or agents outside of the United States? ~~~~~~~~~~~~~~~~ Did the organization have aggregate revenues or expenses of more than $10,000 from grantmaking, fundraising, business, investment, and program service activities outside the United States, or aggregate foreign investments valued at $100,000 or more? If "Yes," complete Schedule F, Parts I and IV ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization report on Part IX, column (A), line 3, more than $5,000 of grants or assistance to any organization or entity located outside the United States? If "Yes," complete Schedule F, Parts II and IV ~~~~~~~~~~~~~~~~~ Did the organization report on Part IX, column (A), line 3, more than $5,000 of aggregate grants or assistance to individuals located outside the United States? If "Yes," complete Schedule F, Parts III and IV ~~~~~~~~~~~~~~~~~~~~~
Did the organization report a total of more than $15,000 of expenses for professional fundraising services on Part IX, column (A), lines 6 and 11e? If "Yes," complete Schedule G, Part I ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 18 Did the organization report more than $15,000 total of fundraising event gross income and contributions on Part VIII, lines 1c and 8a? If "Yes," complete Schedule G, Part II ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 19 Did the organization report more than $15,000 of gross income from gaming activities on Part VIII, line 9a? If "Yes," complete Schedule G, Part III ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 20a Did the organization operate one or more hospital facilities? If "Yes," complete Schedule H ~~~~~~~~~~~~~~~~ b If "Yes" to line 20a, did the organization attach a copy of its audited financial statements to this return? ••••••••••
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10010525 786783 SBA
X X
5
X
6
X
7
X
8
X
9
X
10
X
11a
X
11b
X
11c
X
11d 11e
X
11f
X
12a
X
X
12b 13 14a
X X X
14b
X
15
X
16
X
17
X
18
X
17
132003 01-23-12
X X
3 4
No
X 19 X 20a 20b Form 990 (2011)
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3 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America Part IV Checklist of Required Schedules (continued)
Form 990 (2011)
58-1342181
Page 4 Yes
21 22 23
24a
b c d 25a b
26 27
28 a b c 29 30 31 32 33 34 35a b 36 37 38
Did the organization report more than $5,000 of grants and other assistance to any government or organization in the United States on Part IX, column (A), line 1? If "Yes," complete Schedule I, Parts I and II ~~~~~~~~~~~~~~~~~~ Did the organization report more than $5,000 of grants and other assistance to individuals in the United States on Part IX, column (A), line 2? If "Yes," complete Schedule I, Parts I and III ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization answer "Yes" to Part VII, Section A, line 3, 4, or 5 about compensation of the organization's current and former officers, directors, trustees, key employees, and highest compensated employees? If "Yes," complete Schedule J ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization have a tax-exempt bond issue with an outstanding principal amount of more than $100,000 as of the last day of the year, that was issued after December 31, 2002? If "Yes," answer lines 24b through 24d and complete Schedule K. If "No", go to line 25 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception? ~~~~~~~~~~~ Did the organization maintain an escrow account other than a refunding escrow at any time during the year to defease any tax-exempt bonds? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization act as an "on behalf of" issuer for bonds outstanding at any time during the year? ~~~~~~~~~~~ Section 501(c)(3) and 501(c)(4) organizations. Did the organization engage in an excess benefit transaction with a disqualified person during the year? If "Yes," complete Schedule L, Part I ~~~~~~~~~~~~~~~~~~~~~~~~~ Is the organization aware that it engaged in an excess benefit transaction with a disqualified person in a prior year, and that the transaction has not been reported on any of the organization's prior Forms 990 or 990-EZ? If "Yes," complete Schedule L, Part I ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Was a loan to or by a current or former officer, director, trustee, key employee, highly compensated employee, or disqualified person outstanding as of the end of the organization's tax year? If "Yes," complete Schedule L, Part II ~~~~~~~~~~~ Did the organization provide a grant or other assistance to an officer, director, trustee, key employee, substantial contributor or employee thereof, a grant selection committee member, or to a 35% controlled entity or family member of any of these persons? If "Yes," complete Schedule L, Part III ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Was the organization a party to a business transaction with one of the following parties (see Schedule L, Part IV instructions for applicable filing thresholds, conditions, and exceptions): A current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L, Part IV ~~~~~~~~~~~ A family member of a current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L, Part IV ~~ An entity of which a current or former officer, director, trustee, or key employee (or a family member thereof) was an officer, director, trustee, or direct or indirect owner? If "Yes," complete Schedule L, Part IV~~~~~~~~~~~~~~~~~~~~~ Did the organization receive more than $25,000 in non-cash contributions? If "Yes," complete Schedule M ~~~~~~~~~ Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If "Yes," complete Schedule M ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization liquidate, terminate, or dissolve and cease operations? If "Yes," complete Schedule N, Part I ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets? If "Yes," complete Schedule N, Part II ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization own 100% of an entity disregarded as separate from the organization under Regulations sections 301.7701-2 and 301.7701-3? If "Yes," complete Schedule R, Part I ~~~~~~~~~~~~~~~~~~~~~~~~ Was the organization related to any tax-exempt or taxable entity? If "Yes," complete Schedule R, Parts II, III, IV, and V, line 1 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization have a controlled entity within the meaning of section 512(b)(13)? ~~~~~~~~~~~~~~~~~~ Did the organization receive any payment from or engage in any transaction with a controlled entity within the meaning of section 512(b)(13)? If "Yes," complete Schedule R, Part V, line 2 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Section 501(c)(3) organizations. Did the organization make any transfers to an exempt non-charitable related organization? If "Yes," complete Schedule R, Part V, line 2 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization conduct more than 5% of its activities through an entity that is not a related organization and that is treated as a partnership for federal income tax purposes? If "Yes," complete Schedule R, Part VI ~~~~~~~~ Did the organization complete Schedule O and provide explanations in Schedule O for Part VI, lines 11 and 19? Note. All Form 990 filers are required to complete Schedule O •••••••••••••••••••••••••••••••
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10010525 786783 SBA
21
X
22
X
23
X
24a 24b
No
X
24c 24d 25a
X
25b
X
26
X
27
X
28a 28b
X X
28c 29
X X
30
X
31
X
32
X
33
X
34 35a
X X
35b
X
36
X
37
X
X Form 990 (2011) 38
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4 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America Statements Regarding Other IRS Filings and Tax Compliance
Form 990 (2011)
Part V
58-1342181
Page 5
Check if Schedule O contains a response to any question in this Part V •••••••••••••••••••••••••••••
12 1a Enter the number reported in Box 3 of Form 1096. Enter -0- if not applicable ~~~~~~~~~~~ 1a 0 b Enter the number of Forms W-2G included in line 1a. Enter -0- if not applicable ~~~~~~~~~~ 1b c Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners? ••••••••••••••••••••••••••••••••••••••••••• 1c 2a Enter the number of employees reported on Form W-3, Transmittal of Wage and Tax Statements, 0 filed for the calendar year ending with or within the year covered by this return ~~~~~~~~~~ 2a b If at least one is reported on line 2a, did the organization file all required federal employment tax returns?~~~~~~~~~~ 2b Note. If the sum of lines 1a and 2a is greater than 250, you may be required to e-file (see instructions) 3a Did the organization have unrelated business gross income of $1,000 or more during the year? ~~~~~~~~~~~~~~ 3a b If "Yes," has it filed a Form 990-T for this year? If "No," provide an explanation in Schedule O ~~~~~~~~~~~~~~~ 3b 4a At any time during the calendar year, did the organization have an interest in, or a signature or other authority over, a financial account in a foreign country (such as a bank account, securities account, or other financial account)?~~~~~~~ 4a b If "Yes," enter the name of the foreign country: J See instructions for filing requirements for Form TD F 90-22.1, Report of Foreign Bank and Financial Accounts. 5a Was the organization a party to a prohibited tax shelter transaction at any time during the tax year? ~~~~~~~~~~~~ 5a b Did any taxable party notify the organization that it was or is a party to a prohibited tax shelter transaction?~~~~~~~~~ 5b c If "Yes," to line 5a or 5b, did the organization file Form 8886-T? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 5c 6a Does the organization have annual gross receipts that are normally greater than $100,000, and did the organization solicit any contributions that were not tax deductible? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 6a b If "Yes," did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 6b 7 Organizations that may receive deductible contributions under section 170(c). a Did the organization receive a payment in excess of $75 made partly as a contribution and partly for goods and services provided to the payor? 7a b If "Yes," did the organization notify the donor of the value of the goods or services provided? ~~~~~~~~~~~~~~~ 7b c Did the organization sell, exchange, or otherwise dispose of tangible personal property for which it was required to file Form 8282? •••••••••••••••••••••••••••••••••••••••••••••••••••• 7c d If "Yes," indicate the number of Forms 8282 filed during the year ~~~~~~~~~~~~~~~~ 7d e Did the organization receive any funds, directly or indirectly, to pay premiums on a personal benefit contract? ~~~~~~~ 7e f Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract? ~~~~~~~~~ 7f g If the organization received a contribution of qualified intellectual property, did the organization file Form 8899 as required?~ 7g h If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C? 7h 8 Sponsoring organizations maintaining donor advised funds and section 509(a)(3) supporting organizations. Did the supporting organization, or a donor advised fund maintained by a sponsoring organization, have excess business holdings at any time during the year? 8
Yes
No
X
X X X X X X
X X X X
9
Sponsoring organizations maintaining donor advised funds. a Did the organization make any taxable distributions under section 4966?~~~~~~~~~~~~~~~~~~~~~~~~~~ b Did the organization make a distribution to a donor, donor advisor, or related person? ~~~~~~~~~~~~~~~~~~~ 10 Section 501(c)(7) organizations. Enter: a Initiation fees and capital contributions included on Part VIII, line 12 ~~~~~~~~~~~~~~~ 10a b Gross receipts, included on Form 990, Part VIII, line 12, for public use of club facilities ~~~~~~ 10b 11 Section 501(c)(12) organizations. Enter: a Gross income from members or shareholders ~~~~~~~~~~~~~~~~~~~~~~~~~~ 11a b Gross income from other sources (Do not net amounts due or paid to other sources against amounts due or received from them.) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 11b 12a Section 4947(a)(1) non-exempt charitable trusts. Is the organization filing Form 990 in lieu of Form 1041? b If "Yes," enter the amount of tax-exempt interest received or accrued during the year •••••• 12b 13 Section 501(c)(29) qualified nonprofit health insurance issuers. a Is the organization licensed to issue qualified health plans in more than one state? ~~~~~~~~~~~~~~~~~~~~~ Note. See the instructions for additional information the organization must report on Schedule O. b Enter the amount of reserves the organization is required to maintain by the states in which the organization is licensed to issue qualified health plans ~~~~~~~~~~~~~~~~~~~~~~ 13b c Enter the amount of reserves on hand ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 13c 14a Did the organization receive any payments for indoor tanning services during the tax year? ~~~~~~~~~~~~~~~~ b If "Yes," has it filed a Form 720 to report these payments? If "No," provide an explanation in Schedule O ••••••••••
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12a
13a
X 14a 14b Form 990 (2011)
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5 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America 58-1342181 Page 6 For each "Yes" response to lines 2 through 7b below, and for a "No" response Part VI Governance, Management, and Disclosure
Form 990 (2011)
to line 8a, 8b, or 10b below, describe the circumstances, processes, or changes in Schedule O. See instructions.
Check if Schedule O contains a response to any question in this Part VI •••••••••••••••••••••••••••••
Section A. Governing Body and Management 1a Enter the number of voting members of the governing body at the end of the tax year ~~~~~~ If there are material differences in voting rights among members of the governing body, or if the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.
1a
Yes
12
12 1b b Enter the number of voting members included in line 1a, above, who are independent ~~~~~~ 2 Did any officer, director, trustee, or key employee have a family relationship or a business relationship with any other 2 officer, director, trustee, or key employee? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 3 Did the organization delegate control over management duties customarily performed by or under the direct supervision 3 of officers, directors, or trustees, or key employees to a management company or other person? ~~~~~~~~~~~~~~ 4 4 Did the organization make any significant changes to its governing documents since the prior Form 990 was filed? ~~~~~ 5 5 Did the organization become aware during the year of a significant diversion of the organization's assets? ~~~~~~~~~ 6 6 Did the organization have members or stockholders? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 7a Did the organization have members, stockholders, or other persons who had the power to elect or appoint one or 7a more members of the governing body? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ b Are any governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or 7b persons other than the governing body? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 8 Did the organization contemporaneously document the meetings held or written actions undertaken during the year by the following: a The governing body? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ b Each committee with authority to act on behalf of the governing body? ~~~~~~~~~~~~~~~~~~~~~~~~~~ Is there any officer, director, trustee, or key employee listed in Part VII, Section A, who cannot be reached at the organization's mailing address? If "Yes," provide the names and addresses in Schedule O ••••••••••••••••• Section B. Policies (This Section B requests information about policies not required by the Internal Revenue Code.)
8a 8b
X
13 14 15 a b 16a b
Did the organization have a written whistleblower policy? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the organization have a written document retention and destruction policy? ~~~~~~~~~~~~~~~~~~~~~~ Did the process for determining compensation of the following persons include a review and approval by independent persons, comparability data, and contemporaneous substantiation of the deliberation and decision? The organization's CEO, Executive Director, or top management official ~~~~~~~~~~~~~~~~~~~~~~~~~~ Other officers or key employees of the organization ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If "Yes" to line 15a or 15b, describe the process in Schedule O (see instructions). Did the organization invest in, contribute assets to, or participate in a joint venture or similar arrangement with a taxable entity during the year? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If "Yes," did the organization follow a written policy or procedure requiring the organization to evaluate its participation in joint venture arrangements under applicable federal tax law, and take steps to safeguard the organization's exempt status with respect to such arrangements? ••••••••••••••••••••••••••••••••••••
X X X X
9
Section C. Disclosure 17 18
19 20
10a
X
10b 11a
X X
12a 12b
X X
12c 13 14
X X X
15a 15b
16a
X X X
X
Yes
b Were officers, directors, or trustees, and key employees required to disclose annually interests that could give rise to conflicts? ~~~~~~ c Did the organization regularly and consistently monitor and enforce compliance with the policy? If "Yes," describe in Schedule O how this was done ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No
X
9
10a Did the organization have local chapters, branches, or affiliates? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ b If "Yes," did the organization have written policies and procedures governing the activities of such chapters, affiliates, and branches to ensure their operations are consistent with the organization's exempt purposes? ~~~~~~~~~~~~~ 11a Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form? b Describe in Schedule O the process, if any, used by the organization to review this Form 990. 12a Did the organization have a written conflict of interest policy? If "No," go to line 13 ~~~~~~~~~~~~~~~~~~~~
X
X
No
X X
16b
List the states with which a copy of this Form 990 is required to be filed JAL,AK,AR,AZ,CA,CO,CT,FL,GA,IL,KS,KY Section 6104 requires an organization to make its Forms 1023 (or 1024 if applicable), 990, and 990-T (Section 501(c)(3)s only) available for public inspection. Indicate how you made these available. Check all that apply. X Own website X Another's website X Upon request Describe in Schedule O whether (and if so, how), the organization made its governing documents, conflict of interest policy, and financial statements available to the public during the tax year. State the name, physical address, and telephone number of the person who possesses the books and records of the organization: |
Joseph Martin - 800-621-3141 4590 Macarthur Boulevard, NW, No. 250, Washington, DC 20007 132006 See Schedule O for full list of states 01-23-12 Form 990 (2011) 6 10010525 786783 SBA 2011.03050 Spina Bifida Association of SBA____1
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Spina Bifida Association of America 58-1342181 Part VII Compensation of Officers, Directors, Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors
Page 7
Form 990 (2011)
Check if Schedule O contains a response to any question in this Part VII ••••••••••••••••••••••••••••• Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees 1a Complete this table for all persons required to be listed. Report compensation for the calendar year ending with or within the organization's tax year. ¥ List all of the organization's current officers, directors, trustees (whether individuals or organizations), regardless of amount of compensation. Enter -0- in columns (D), (E), and (F) if no compensation was paid. ¥ List all of the organization's current key employees, if any. See instructions for definition of "key employee." ¥ List the organization's five current highest compensated employees (other than an officer, director, trustee, or key employee) who received reportable compensation (Box 5 of Form W-2 and/or Box 7 of Form 1099-MISC) of more than $100,000 from the organization and any related organizations . ¥ List all of the organization's former officers, key employees, and highest compensated employees who received more than $100,000 of reportable compensation from the organization and any related organizations. ¥ List all of the organization's former directors or trustees that received, in the capacity as a former director or trustee of the organization, more than $10,000 of reportable compensation from the organization and any related organizations. List persons in the following order: individual trustees or directors; institutional trustees; officers; key employees; highest compensated employees; and former such persons.
(1) George Sturm Chair (2) Ana Ximenes Chair-Elect (3) Joyce Jones Immediate Past Chair (4) Brian Packard Secretary/Treasurer (5) Angela Cosby Board Member (6) Donna Jones Board Member (7) Kerri McMains Board Member (8) William D. Milligan, Jr. Board Member (9) Megan Sorensen Board Member (10) William O. Walker, Jr, MD Board Member (11) Julie Yindra Board Member (12) Donna Zahra, PhD, ARNP Board Member (13) Cindy Brownstein President and CEO (14) Sara Struwe COO (15) Joseph Martin Controller (16) Christopher Vance Director of Development
132007 01-23-12
10010525 786783 SBA
Former
Highest compensated employee
Key employee
Officer
Institutional trustee
Individual trustee or director
Check this box if neither the organization nor any related organization compensated any current officer, director, or trustee. (A) (B) (C) (D) (E) Position Name and Title Average Reportable Reportable (do not check more than one hours per box, unless person is both an compensation compensation officer and a director/trustee) week from from related (describe the organizations hours for organization (W-2/1099-MISC) related (W-2/1099-MISC) organizations in Schedule O)
(F) Estimated amount of other compensation from the organization and related organizations
2.00 X
X
0.
0.
0.
1.00 X
X
0.
0.
0.
1.00 X
X
0.
0.
0.
1.00 X
X
0.
0.
0.
1.00 X
0.
0.
0.
1.00 X
0.
0.
0.
1.00 X
0.
0.
0.
1.00 X
0.
0.
0.
1.00 X
0.
0.
0.
1.00 X
0.
0.
0.
1.00 X
0.
0.
0.
1.00 X
0.
0.
0.
22.20
X
166,067.
0.
9,571.
37.50
X
109,025.
0.
6,889.
36.80
X
95,030.
0.
16,018.
101,369.
0.
11,258.
34.80
X
Form 990 (2011) 7 2011.03050 Spina Bifida Association of SBA____1
COPY
1b c d 2
Former
Highest compensated employee
Officer
Key employee
Institutional trustee
Individual trustee or director
Spina Bifida Association of America 58-1342181 Page 8 Form 990 (2011) (continued) Part VII Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees (B) (C) (A) (D) (E) (F) Position Average Name and title Reportable Reportable Estimated (do not check more than one hours per box, unless person is both an compensation compensation amount of officer and a director/trustee) week from from related other (describe the organizations compensation hours for organization (W-2/1099-MISC) from the related (W-2/1099-MISC) organization organizations and related in Schedule organizations O)
471,491. 0. Sub-total ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | 0. 0. Total from continuation sheets to Part VII, Section A ~~~~~~~~ | 471,491. 0. Total (add lines 1b and 1c) •••••••••••••••••••••• | Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organization |
43,736. 0. 43,736. 3 Yes
3
Did the organization list any former officer, director, or trustee, key employee, or highest compensated employee on line 1a? If "Yes," complete Schedule J for such individual ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 4 For any individual listed on line 1a, is the sum of reportable compensation and other compensation from the organization and related organizations greater than $150,000? If "Yes," complete Schedule J for such individual~~~~~~~~~~~~~ 5 Did any person listed on line 1a receive or accrue compensation from any unrelated organization or individual for services rendered to the organization? If "Yes," complete Schedule J for such person •••••••••••••••••••••••• Section B. Independent Contractors 1
X
5
X
Complete this table for your five highest compensated independent contractors that received more than $100,000 of compensation from the organization. Report compensation for the calendar year ending with or within the organization's tax year. (A) (B) (C) Name and business address Description of services Compensation
Disneyland Resort File 51129, Los Angeles, CA 90007 Think Design and Communication, 407 N. Washington Street, Suite 102, Falls Drinker, Biddle & Reath LLP, 1 Logan Square, Ste 2000, Philadelphia, PA 19103
2
X
3 4
No
Hotel and Conference Center Design, printing and mailing services Government Relations
246,989. 227,687. 154,703.
Total number of independent contractors (including but not limited to those listed above) who received more than 3 $100,000 of compensation from the organization | Form 990 (2011)
132008 01-23-12
10010525 786783 SBA
COPY
8 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America Statement of Revenue
Form 990 (2011)
Part VIII
Program Service Revenue
Contributions, Gifts, Grants and Other Similar Amounts
(A) Total revenue
1 a b c d e f
6 a b c d 7 a b c d 8 a
1f
366,900. 19,141.
30,898.
8,844.
8,844.
725.
725.
b c Net income or (loss) from fundraising events ••••• | 9 a Gross income from gaming activities. See Part IV, line 19 ~~~~~~~~~~~~~ a b Less: direct expenses ~~~~~~~~~ b c Net income or (loss) from gaming activities •••••• | 10 a Gross sales of inventory, less returns and allowances ~~~~~~~~~~~~~ a b Less: cost of goods sold ~~~~~~~~ b c Net income or (loss) from sales of inventory •••••• | Miscellaneous Revenue Business Code 900099 8,484. 11 a Miscellaneous b c d All other revenue ~~~~~~~~~~~~~ 8,484. e Total. Add lines 11a-11d ~~~~~~~~~~~~~~~ | 3,423,303. Total revenue. See instructions. ••••••••••••• | 12
10010525 786783 SBA
(D) Revenue excluded from tax under sections 512, 513, or 514
1,336,801.
other similar amounts)~~~~~~~~~~~~~~~~~ | Income from investment of tax-exempt bond proceeds | Royalties ••••••••••••••••••••••• | (i) Real (ii) Personal Gross rents ~~~~~~~ Less: rental expenses ~~~ Rental income or (loss) ~~ Net rental income or (loss) •••••••••••••• | Gross amount from sales of (i) Securities (ii) Other assets other than inventory 371,476. Less: cost or other basis and sales expenses ~~~ 370,751. 725. Gain or (loss) ~~~~~~~ Net gain or (loss) ••••••••••••••••••• | Gross income from fundraising events (not including $ of contributions reported on line 1c). See Part IV, line 18 ~~~~~~~~~~~~~ a Less: direct expenses~~~~~~~~~~ b
132009 01-23-12
(C) Unrelated business revenue
Page 9
93,299. 1a 1b 1c 1d 1e 1,558,211.
g Noncash contributions included in lines 1a-1f: $ h Total. Add lines 1a-1f ••••••••••••••••• | 2,988,311. Business Code 900099 366,900. 2 a Conference and meeting Advertising 541800 30,898. b Publications 900099 19,141. c d e f All other program service revenue ~~~~~ 416,939. g Total. Add lines 2a-2f ••••••••••••••••• | 3 Investment income (including dividends, interest, and 4 5
Other Revenue
Federated campaigns ~~~~~~ Membership dues ~~~~~~~~ Fundraising events ~~~~~~~~ Related organizations ~~~~~~ Government grants (contributions) All other contributions, gifts, grants, and similar amounts not included above ~~
(B) Related or exempt function revenue
58-1342181
8,484.
386,041.
30,898.
18,053. Form 990 (2011)
COPY
9 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America Part IX Statement of Functional Expenses
Form 990 (2011)
58-1342181
Page 10
Section 501(c)(3) and 501(c)(4) organizations must complete all columns. All other organizations must complete column (A) but are not required to complete columns (B), (C), and (D). Check if Schedule O contains a response to any question in this Part IX •••••••••••••••••••••••••• (A) (B) (C) (D) Total expenses Program service Management and Fundraising expenses general expenses expenses Grants and other assistance to governments and 177,600. 177,600. organizations in the United States. See Part IV, line 21
Do not include amounts reported on lines 6b, 7b, 8b, 9b, and 10b of Part VIII. 1 2 3
4 5 6
7 8
Grants and other assistance to individuals in the United States. See Part IV, line 22 ~~~ Grants and other assistance to governments, organizations, and individuals outside the United States. See Part IV, lines 15 and 16 ~ Benefits paid to or for members ~~~~~~~ Compensation of current officers, directors, trustees, and key employees ~~~~~~~~ Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) ~~~ Other salaries and wages ~~~~~~~~~~ Pension plan accruals and contributions (include ~ Other employee benefits ~~~~~~~~~~ Payroll taxes ~~~~~~~~~~~~~~~~ Fees for services (non-employees): Management ~~~~~~~~~~~~~~~~ Legal ~~~~~~~~~~~~~~~~~~~~ Accounting ~~~~~~~~~~~~~~~~~ Lobbying ~~~~~~~~~~~~~~~~~~ Professional fundraising services. See Part IV, line 17
section 401(k) and section 403(b) employer contributions)
9 10 11
a b c d e f Investment management fees ~~~~~~~~ g Other ~~~~~~~~~~~~~~~~~~~~ 12 Advertising and promotion ~~~~~~~~~ 13 Office expenses~~~~~~~~~~~~~~~ 14 Information technology ~~~~~~~~~~~ 15 Royalties ~~~~~~~~~~~~~~~~~~ 16 17 18 19 20 21 22 23 24
Occupancy ~~~~~~~~~~~~~~~~~ Travel ~~~~~~~~~~~~~~~~~~~ Payments of travel or entertainment expenses for any federal, state, or local public officials Conferences, conventions, and meetings ~~ Interest ~~~~~~~~~~~~~~~~~~ Payments to affiliates ~~~~~~~~~~~~ Depreciation, depletion, and amortization ~~ Insurance ~~~~~~~~~~~~~~~~~ Other expenses. Itemize expenses not covered above. (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.) ~~
a UBI taxes b Publications/Materials c State filing fees d Temporary help e All other expenses 25 Total functional expenses. Add lines 1 through 24e 26 Joint costs. Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation. Check here
|
42,150.
42,150.
402,600.
311,143.
62,094.
29,363.
738,241.
509,882.
32,260.
196,099.
12,785. 78,142. 77,236.
8,386. 44,776. 54,832.
86. 11,327. 6,036.
4,313. 22,039. 16,368.
49,184.
34,791.
4,083.
10,310.
51,861. 146,188.
43,350. 146,188.
2,671.
5,840.
4,403. 422,017. 10,000. 325,061. 444.
347,859. 10,000. 185,132. 435.
4,403. 47,723.
26,435.
124,157. 93,531. 317,346.
67,122. 9.
72,807.
59,578. 74,338.
46,427. 6,019.
18,152. 13,174.
289,981.
16,127.
11,238.
13,094.
6,611. 19,404. 12,477. 7,086. 5,715. 3,137,333.
13,094.
2,417. 18,294. 3,301. 1,500. 141,748. 2,507,681.
4,194. 1,086. 6,525. -136,243. 195,043.
24. 2,651. 5,586. 210. 434,609.
if following SOP 98-2 (ASC 958-720)
132010 01-23-12
10010525 786783 SBA
Form 990 (2011) 10 2011.03050 Spina Bifida Association of SBA____1
COPY
Form 990 (2011)
Part X
Spina Bifida Association of America
58-1342181
Balance Sheet (A) Beginning of year
Cash - non-interest-bearing ~~~~~~~~~~~~~~~~~~~~~~~~~ Savings and temporary cash investments ~~~~~~~~~~~~~~~~~~ Pledges and grants receivable, net ~~~~~~~~~~~~~~~~~~~~~ Accounts receivable, net ~~~~~~~~~~~~~~~~~~~~~~~~~~ Receivables from current and former officers, directors, trustees, key employees, and highest compensated employees. Complete Part II of Schedule L ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 6 Receivables from other disqualified persons (as defined under section 4958(f)(1)), persons described in section 4958(c)(3)(B), and contributing employers and sponsoring organizations of section 501(c)(9) voluntary employees' beneficiary organizations (see instructions) ~~~~~~~~~~~ 7 Notes and loans receivable, net ~~~~~~~~~~~~~~~~~~~~~~~ 8 Inventories for sale or use ~~~~~~~~~~~~~~~~~~~~~~~~~~ 9 Prepaid expenses and deferred charges ~~~~~~~~~~~~~~~~~~ 10 a Land, buildings, and equipment: cost or other 199,733. basis. Complete Part VI of Schedule D ~~~ 10a 157,544. b Less: accumulated depreciation ~~~~~~ 10b 11 Investments - publicly traded securities ~~~~~~~~~~~~~~~~~~~ 12 Investments - other securities. See Part IV, line 11 ~~~~~~~~~~~~~~ 13 Investments - program-related. See Part IV, line 11 ~~~~~~~~~~~~~ 14 Intangible assets ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 15 Other assets. See Part IV, line 11 ~~~~~~~~~~~~~~~~~~~~~~ 16 Total assets. Add lines 1 through 15 (must equal line 34) •••••••••• 17 Accounts payable and accrued expenses ~~~~~~~~~~~~~~~~~~ 18 Grants payable ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 19 Deferred revenue ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 20 Tax-exempt bond liabilities ~~~~~~~~~~~~~~~~~~~~~~~~~ 21 Escrow or custodial account liability. Complete Part IV of Schedule D ~~~~ 22 Payables to current and former officers, directors, trustees, key employees, highest compensated employees, and disqualified persons. Complete Part II of Schedule L ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Liabilities
Assets
1 2 3 4 5
23 24 25
Net Assets or Fund Balances
26
27 28 29
30 31 32 33 34
Secured mortgages and notes payable to unrelated third parties ~~~~~~ Unsecured notes and loans payable to unrelated third parties ~~~~~~~~ Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17-24). Complete Part X of Schedule D ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Total liabilities. Add lines 17 through 25 •••••••••••••••••• X and complete Organizations that follow SFAS 117, check here | lines 27 through 29, and lines 33 and 34. Unrestricted net assets ~~~~~~~~~~~~~~~~~~~~~~~~~~~ Temporarily restricted net assets ~~~~~~~~~~~~~~~~~~~~~~ Permanently restricted net assets ~~~~~~~~~~~~~~~~~~~~~ Organizations that do not follow SFAS 117, check here | and complete lines 30 through 34. Capital stock or trust principal, or current funds ~~~~~~~~~~~~~~~ Paid-in or capital surplus, or land, building, or equipment fund ~~~~~~~~ Retained earnings, endowment, accumulated income, or other funds ~~~~ Total net assets or fund balances ~~~~~~~~~~~~~~~~~~~~~~ Total liabilities and net assets/fund balances ••••••••••••••••
132011 01-23-12
10010525 786783 SBA
62,284. 523,018. 396,955.
Page 11
(B) End of year
159,690. 520,983. 769,025.
1 2 3 4
5
21,867. 79,330. 17,674. 540,729.
159,621. 1,801,478. 189,189. 11,938.
6 7 8 9
24,262. 55,092.
10c 11 12 13 14 15 16 17 18 19 20 21
42,189. 590,180.
0. 2,161,421. 168,410. 116,602.
22 23 24
6,544. 207,671.
25 26
4,908. 289,920.
1,290,840. 203,181. 99,786.
27 28 29
963,534. 553,181. 354,786.
1,593,807. 1,801,478.
30 31 32 33 34
1,871,501. 2,161,421. Form 990 (2011)
COPY
11 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America Part XI Reconciliation of Net Assets
Form 990 (2011)
58-1342181
Page 12
Check if Schedule O contains a response to any question in this Part XI ••••••••••••••••••••••••••••• Total revenue (must equal Part VIII, column (A), line 12) ~~~~~~~~~~~~~~~~~~~~~~~~~~ Total expenses (must equal Part IX, column (A), line 25) ~~~~~~~~~~~~~~~~~~~~~~~~~~ Revenue less expenses. Subtract line 2 from line 1 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) ~~~~~~~~~~ Other changes in net assets or fund balances (explain in Schedule O) ~~~~~~~~~~~~~~~~~~~ Net assets or fund balances at end of year. Combine lines 3, 4, and 5 (must equal Part X, line 33, column (B))
1 2 3 4 5 6
Part XII Financial Statements and Reporting
1 2 3 4 5 6
3,423,303. 3,137,333. 285,970. 1,593,807. -8,276. 1,871,501.
Check if Schedule O contains a response to any question in this Part XII ••••••••••••••••••••••••••••• Yes
X
1 2a b c
d
3a b
Accounting method used to prepare the Form 990: Cash Accrual Other If the organization changed its method of accounting from a prior year or checked "Other," explain in Schedule O. Were the organization's financial statements compiled or reviewed by an independent accountant? ~~~~~~~~~~~~ Were the organization's financial statements audited by an independent accountant? ~~~~~~~~~~~~~~~~~~~ If "Yes" to line 2a or 2b, does the organization have a committee that assumes responsibility for oversight of the audit, review, or compilation of its financial statements and selection of an independent accountant? ~~~~~~~~~~~~~~~ If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O. If "Yes" to line 2a or 2b, check a box below to indicate whether the financial statements for the year were issued on a separate basis, consolidated basis, or both: X Separate basis Consolidated basis Both consolidated and separate basis As a result of a federal award, was the organization required to undergo an audit or audits as set forth in the Single Audit Act and OMB Circular A-133? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If "Yes," did the organization undergo the required audit or audits? If the organization did not undergo the required audit or audits, explain why in Schedule O and describe any steps taken to undergo such audits. ••••••••••••••••
132012 01-23-12
10010525 786783 SBA
X
2a 2b
X
2c
X
3a
X
No
X
3b X Form 990 (2011)
COPY
12 2011.03050 Spina Bifida Association of SBA____1
SCHEDULE A (Form 990 or 990-EZ)
2011
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.
Department of the Treasury Internal Revenue Service
Name of the organization
Part I
OMB No. 1545-0047
Public Charity Status and Public Support
Open to Public Inspection Employer identification number
Spina Bifida Association of America Reason for Public Charity Status (All organizations must complete this part.) See instructions.
58-1342181
The organization is not a private foundation because it is: (For lines 1 through 11, check only one box.) 1 A church, convention of churches, or association of churches described in section 170(b)(1)(A)(i). 2 A school described in section 170(b)(1)(A)(ii). (Attach Schedule E.) 3 A hospital or a cooperative hospital service organization described in section 170(b)(1)(A)(iii). A medical research organization operated in conjunction with a hospital described in section 170(b)(1)(A)(iii). Enter the hospital's name, 4 city, and state: An organization operated for the benefit of a college or university owned or operated by a governmental unit described in 5 section 170(b)(1)(A)(iv). (Complete Part II.) 6 7
X
8 9
10 11
e f g
h
A federal, state, or local government or governmental unit described in section 170(b)(1)(A)(v). An organization that normally receives a substantial part of its support from a governmental unit or from the general public described in section 170(b)(1)(A)(vi). (Complete Part II.) A community trust described in section 170(b)(1)(A)(vi). (Complete Part II.) An organization that normally receives: (1) more than 33 1/3% of its support from contributions, membership fees, and gross receipts from activities related to its exempt functions - subject to certain exceptions, and (2) no more than 33 1/3% 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.) An organization organized and operated exclusively to test for public safety. See section 509(a)(4). An organization organized and operated exclusively for the benefit of, to perform the functions of, or to carry out the purposes of one or more publicly supported organizations described in section 509(a)(1) or section 509(a)(2). See section 509(a)(3). Check the box that describes the type of supporting organization and complete lines 11e through 11h. a Type I b Type II c Type III - Functionally integrated d Type III - Other 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). 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 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 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) and (iii) below, Yes No 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) Provide the following information about the supported organization(s).
(i) Name of supported organization
(ii) EIN
(iii) Type of (vi) Is the (iv) Is the organization (v) Did you notify the in col. organization in col. (i) listed in your organization in col. organization (described on lines 1-9 governing document? (i) of your support? (i) organized in the U.S.? above or IRC section (see instructions)) Yes No Yes No Yes No
Total LHA For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ. 132021 01-24-12
10010525 786783 SBA
(vii) Amount of support
Schedule A (Form 990 or 990-EZ) 2011
COPY
13 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America 58-1342181 Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi)
Schedule A (Form 990 or 990-EZ) 2011
Part II
Page 2
(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) | 1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") ~~
(a) 2007
(b) 2008
(c) 2009
(d) 2010
(e) 2011
(f) Total
2588244. 3014228. 2490586. 2465740. 2988311.13547109.
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) ~~~~~~~~~~~~
2588244. 3014228. 2490586. 2465740. 2988311.13547109.
16,813. 13530296.
6 Public support. Subtract line 5 from line 4.
Section B. Total Support
Calendar year (or fiscal year beginning in) | 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
(a) 2007
(b) 2008
(c) 2009
(d) 2010
(e) 2011
(f) Total
2588244. 3014228. 2490586. 2465740. 2988311.13547109.
16,487.
30,676.
9,272.
16,453.
13,745.
19,206.
8,844.
67,554.
20,270.
16,814.
11,931.
49,015.
704.
1,443.
8,484.
57,760. 13721438. 2,827,021.
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 section 501(c)(3) organization, check this box and stop here ••••••••••••••••••••••••••••••••••••••••••••• |
Section C. Computation of Public Support Percentage
98.61 % 14 Public support percentage for 2011 (line 6, column (f) divided by line 11, column (f)) ~~~~~~~~~~~~ 14 98.56 % 15 Public support percentage from 2010 Schedule A, Part II, line 14 ~~~~~~~~~~~~~~~~~~~~~ 15 16a 33 1/3% support test - 2011. 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 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | X b 33 1/3% support test - 2010. 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 - 2011. 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 - 2010. 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) 2011
132022 01-24-12
10010525 786783 SBA
COPY
14 2011.03050 Spina Bifida Association of SBA____1
Schedule A (Form 990 or 990-EZ) 2011
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) 2007
(b) 2008
(c) 2009
(d) 2010
(e) 2011
(f) Total
(a) 2007
(b) 2008
(c) 2009
(d) 2010
(e) 2011
(f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") ~~ 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 3 Gross receipts from activities that are not an unrelated trade or business under section 513 ~~~~~ 4 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf ~~~~ 5 The value of services or facilities furnished by a governmental unit to the organization without charge ~ 6 Total. Add lines 1 through 5 ~~~ 7 a Amounts included on lines 1, 2, and 3 received from disqualified persons 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 ~~~~~~
c Add lines 7a and 7b ~~~~~~~ 8 Public support (Subtract line 7c from line 6.)
Section B. Total Support
Calendar year (or fiscal year beginning in) | 9 Amounts from line 6 ~~~~~~~ 10a Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources ~ b Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975 ~~~~ c Add lines 10a and 10b ~~~~~~ 11 Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on ~~~~~~~ 12 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part IV.) ~~~~ 13 Total support (Add lines 9, 10c, 11, and 12.)
14 First five years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here •••••••••••••••••••••••••••••••••••••••••••••••••••• |
Section C. Computation of Public Support Percentage
15 Public support percentage for 2011 (line 8, column (f) divided by line 13, column (f)) ~~~~~~~~~~~~ 16 Public support percentage from 2010 Schedule A, Part III, line 15 ••••••••••••••••••••
Section D. Computation of Investment Income Percentage
% %
15 16
17 Investment income percentage for 2011 (line 10c, column (f) divided by line 13, column (f)) ~~~~~~~~ 17 18 Investment income percentage from 2010 Schedule A, Part III, line 17 ~~~~~~~~~~~~~~~~~~ 18 19 a 33 1/3% support tests - 2011. 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 - 2010. 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 •••••••• | 132023 01-24-12
10010525 786783 SBA
% %
Schedule A (Form 990 or 990-EZ) 2011
COPY
15 2011.03050 Spina Bifida Association of SBA____1
** PUBLIC DISCLOSURE COPY **
Schedule B
Schedule of Contributors
(Form 990, 990-EZ, or 990-PF)
| Attach to Form 990, Form 990-EZ, or Form 990-PF.
Department of the Treasury Internal Revenue Service
Name of the organization
OMB No. 1545-0047
2011
Employer identification number
Spina Bifida Association of America
58-1342181
Organization type (check one): Filers of: Form 990 or 990-EZ
Section:
X
501(c)(
3
) (enter number) organization
4947(a)(1) nonexempt charitable trust not treated as a private foundation 527 political organization Form 990-PF
501(c)(3) exempt private foundation 4947(a)(1) nonexempt charitable trust treated as a private foundation 501(c)(3) taxable private foundation
Check if your organization is covered by the General Rule or a Special Rule. Note. Only a section 501(c)(7), (8), or (10) organization can check boxes for both the General Rule and a Special Rule. See instructions. General Rule For an organization filing Form 990, 990-EZ, or 990-PF that received, during the year, $5,000 or more (in money or property) from any one contributor. Complete Parts I and II. Special Rules
X
For a section 501(c)(3) organization filing Form 990 or 990-EZ that met the 33 1/3% support test of the regulations under sections 509(a)(1) and 170(b)(1)(A)(vi) and received from any one contributor, during the year, a contribution of the greater of (1) $5,000 or (2) 2% of the amount on (i) Form 990, Part VIII, line 1h, or (ii) Form 990-EZ, line 1. Complete Parts I and II. For a section 501(c)(7), (8), or (10) organization filing Form 990 or 990-EZ that received from any one contributor, during the year, total contributions of more than $1,000 for use exclusively for religious, charitable, scientific, literary, or educational purposes, or the prevention of cruelty to children or animals. Complete Parts I, II, and III. For a section 501(c)(7), (8), or (10) organization filing Form 990 or 990-EZ that received from any one contributor, during the year, contributions for use exclusively for religious, charitable, etc., purposes, but these contributions did not total to more than $1,000. If this box is checked, enter here the total contributions that were received during the year for an exclusively religious, charitable, etc., purpose. Do not complete any of the parts unless the General Rule applies to this organization because it received nonexclusively religious, charitable, etc., contributions of $5,000 or more during the year. ~~~~~~~~~~~~~~~~~ | $
Caution. An organization that is not covered by the General Rule and/or the Special Rules does not file Schedule B (Form 990, 990-EZ, or 990-PF), but it must answer "No" on Part IV, line 2, of its Form 990; or check the box on line H of its Form 990-EZ or on Part I, line 2 of its Form 990-PF, to certify that it does not meet the filing requirements of Schedule B (Form 990, 990-EZ, or 990-PF). LHA For Paperwork Reduction Act Notice, see the Instructions for Form 990, 990-EZ, or 990-PF. Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
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Page 2
Schedule B (Form 990, 990-EZ, or 990-PF) (2011) Name of organization
Employer identification number
Spina Bifida Association of America Part I
Contributors
58-1342181
(see instructions). Use duplicate copies of Part I if additional space is needed.
(a) No.
(b) Name, address, and ZIP + 4
(c) Total contributions
1 $
250,000.
(d) Type of contribution Person Payroll Noncash
X
(Complete Part II if there is a noncash contribution.) (a) No.
(b) Name, address, and ZIP + 4
(c) Total contributions
2 $
70,000.
(d) Type of contribution Person Payroll Noncash
X
(Complete Part II if there is a noncash contribution.) (a) No.
(b) Name, address, and ZIP + 4
(c) Total contributions
3 $
292,090.
(d) Type of contribution Person Payroll Noncash
X
(Complete Part II if there is a noncash contribution.) (a) No.
(b) Name, address, and ZIP + 4
(c) Total contributions
4 $
1,558,211.
(d) Type of contribution Person Payroll Noncash
X
(Complete Part II if there is a noncash contribution.) (a) No.
(b) Name, address, and ZIP + 4
(c) Total contributions
(d) Type of contribution Person Payroll Noncash
$
(Complete Part II if there is a noncash contribution.) (a) No.
(b) Name, address, and ZIP + 4
(c) Total contributions
$
(d) Type of contribution Person Payroll Noncash (Complete Part II if there is a noncash contribution.)
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Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
COPY
17 2011.03050 Spina Bifida Association of SBA____1
Page 3 Employer identification number
Schedule B (Form 990, 990-EZ, or 990-PF) (2011) Name of organization
Spina Bifida Association of America Part II
Noncash Property
(a) No. from Part I
58-1342181
(see instructions). Use duplicate copies of Part II if additional space is needed.
(b) Description of noncash property given
(c) FMV (or estimate) (see instructions)
(d) Date received
(c) FMV (or estimate) (see instructions)
(d) Date received
(c) FMV (or estimate) (see instructions)
(d) Date received
(c) FMV (or estimate) (see instructions)
(d) Date received
(c) FMV (or estimate) (see instructions)
(d) Date received
(c) FMV (or estimate) (see instructions)
(d) Date received
$ (a) No. from Part I
(b) Description of noncash property given
$ (a) No. from Part I
(b) Description of noncash property given
$ (a) No. from Part I
(b) Description of noncash property given
$ (a) No. from Part I
(b) Description of noncash property given
$ (a) No. from Part I
(b) Description of noncash property given
$ 123453 01-23-12
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Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
COPY
18 2011.03050 Spina Bifida Association of SBA____1
Page 4 Employer identification number
Schedule B (Form 990, 990-EZ, or 990-PF) (2011) Name of organization
Spina Bifida Association of America 58-1342181 Exclusively religious, charitable, etc., individual contributions to section 501(c)(7), (8), or (10) organizations that total more than $1,000 for the Part III year. Complete columns (a) through (e) and the following line entry. For organizations completing Part III, enter the total of exclusively religious, charitable, etc., contributions of $1,000 or less for the year. (Enter this information once.) | $ Use duplicate copies of Part III if additional space is needed.
(a) No. from Part I
(b) Purpose of gift
(c) Use of gift
(d) Description of how gift is held
(e) Transfer of gift Transferee's name, address, and ZIP + 4
(a) No. from Part I
(b) Purpose of gift
Relationship of transferor to transferee
(c) Use of gift
(d) Description of how gift is held
(e) Transfer of gift Transferee's name, address, and ZIP + 4
(a) No. from Part I
(b) Purpose of gift
Relationship of transferor to transferee
(c) Use of gift
(d) Description of how gift is held
(e) Transfer of gift Transferee's name, address, and ZIP + 4
(a) No. from Part I
(b) Purpose of gift
Relationship of transferor to transferee
(c) Use of gift
(d) Description of how gift is held
(e) Transfer of gift Transferee's name, address, and ZIP + 4
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Relationship of transferor to transferee
Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
COPY
19 2011.03050 Spina Bifida Association of SBA____1
Political Campaign and Lobbying Activities
SCHEDULE C (Form 990 or 990-EZ)
OMB No. 1545-0047
2011
For Organizations Exempt From Income Tax Under section 501(c) and section 527
J Complete if the organization is described below. J Attach to Form 990 or Form 990-EZ.
Open to Public Inspection | See separate instructions. If the organization answered "Yes" to Form 990, Part IV, line 3, or Form 990-EZ, Part V, line 46 (Political Campaign Activities), then ¥ Section 501(c)(3) organizations: Complete Parts I-A and B. Do not complete Part I-C. ¥ Section 501(c) (other than section 501(c)(3)) organizations: Complete Parts I-A and C below. Do not complete Part I-B. ¥ Section 527 organizations: Complete Part I-A only. If the organization answered "Yes" to Form 990, Part IV, line 4, or Form 990-EZ, Part VI, line 47 (Lobbying Activities), then ¥ Section 501(c)(3) organizations that have filed Form 5768 (election under section 501(h)): Complete Part II-A. Do not complete Part II-B. ¥ Section 501(c)(3) organizations that have NOT filed Form 5768 (election under section 501(h)): Complete Part II-B. Do not complete Part II-A. If the organization answered "Yes" to Form 990, Part IV, line 5 (Proxy Tax), or Form 990-EZ, Part V, line 35c (Proxy Tax), then ¥ Section 501(c)(4), (5), or (6) organizations: Complete Part III. Name of organization Employer identification number
Department of the Treasury Internal Revenue Service
Part I-A
Spina Bifida Association of America 58-1342181 Complete if the organization is exempt under section 501(c) or is a section 527 organization.
1 Provide a description of the organization's direct and indirect political campaign activities in Part IV. 2 Political expenditures ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ J $ 3 Volunteer hours ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Part I-B
Complete if the organization is exempt under section 501(c)(3).
1 Enter the amount of any excise tax incurred by the organization under section 4955 ~~~~~~~~~~~~~ J $ 2 Enter the amount of any excise tax incurred by organization managers under section 4955 ~~~~~~~~~~ J $ 3 If the organization incurred a section 4955 tax, did it file Form 4720 for this year? ~~~~~~~~~~~~~~~~~~~ 4a Was a correction made? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ b If "Yes," describe in Part IV.
Yes Yes
No No
Part I-C
Complete if the organization is exempt under section 501(c), except section 501(c)(3). Enter the amount directly expended by the filing organization for section 527 exempt function activities ~~~~ J $
1 2 Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ J $ 3 Total exempt function expenditures. Add lines 1 and 2. Enter here and on Form 1120-POL, line 17b ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ J $ 4 Did the filing organization file Form 1120-POL for this year? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Yes No 5 Enter the names, addresses and employer identification number (EIN) of all section 527 political organizations to which the filing organization made payments. For each organization listed, enter the amount paid from the filing organization's funds. Also enter the amount of political contributions received that were promptly and directly delivered to a separate political organization, such as a separate segregated fund or a political action committee (PAC). If additional space is needed, provide information in Part IV. (a) Name
(b) Address
(c) EIN
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
(d) Amount paid from (e) Amount of political contributions received and filing organization's promptly and directly funds. If none, enter -0-. delivered to a separate political organization. If none, enter -0-.
Schedule C (Form 990 or 990-EZ) 2011
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20 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America 58-1342181 Complete if the organization is exempt under section 501(c)(3) and filed Form 5768 (election under section 501(h)).
Schedule C (Form 990 or 990-EZ) 2011
Part II-A A Check
J
B Check
J
1a b c d e f
if the filing organization belongs to an affiliated group (and list in Part IV each affiliated group member's name, address, EIN, expenses, and share of excess lobbying expenditures). if the filing organization checked box A and "limited control" provisions apply. (a) Filing (b) Affiliated group Limits on Lobbying Expenditures organization's totals (The term "expenditures" means amounts paid or incurred.) totals
Total lobbying expenditures to influence public opinion (grass roots lobbying) ~~~~~~~~~~ Total lobbying expenditures to influence a legislative body (direct lobbying) ~~~~~~~~~~~ Total lobbying expenditures (add lines 1a and 1b) ~~~~~~~~~~~~~~~~~~~~~~~~ Other exempt purpose expenditures ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Total exempt purpose expenditures (add lines 1c and 1d) ~~~~~~~~~~~~~~~~~~~~ Lobbying nontaxable amount. Enter the amount from the following table in both columns. If the amount on line 1e, column (a) or (b) is: The lobbying nontaxable amount is: Not over $500,000 Over $500,000 but not over $1,000,000 Over $1,000,000 but not over $1,500,000 Over $1,500,000 but not over $17,000,000 Over $17,000,000
g h i j
Page 2
44,824. 134,470. 179,294. 2,953,529. 3,132,823. 306,641.
20% of the amount on line 1e. $100,000 plus 15% of the excess over $500,000. $175,000 plus 10% of the excess over $1,000,000. $225,000 plus 5% of the excess over $1,500,000. $1,000,000.
76,660. Grassroots nontaxable amount (enter 25% of line 1f) ~~~~~~~~~~~~~~~~~~~~~~ 0. Subtract line 1g from line 1a. If zero or less, enter -0- ~~~~~~~~~~~~~~~~~~~~~~ 0. Subtract line 1f from line 1c. If zero or less, enter -0- ~~~~~~~~~~~~~~~~~~~~~~ If there is an amount other than zero on either line 1h or line 1i, did the organization file Form 4720 reporting section 4911 tax for this year? •••••••••••••••••••••••••••••••••••••• 4-Year Averaging Period Under Section 501(h) (Some organizations that made a section 501(h) election do not have to complete all of the five columns below. See the instructions for lines 2a through 2f on page 4.)
Yes
No
Lobbying Expenditures During 4-Year Averaging Period Calendar year (or fiscal year beginning in)
2 a Lobbying nontaxable amount b Lobbying ceiling amount (150% of line 2a, column(e)) c Total lobbying expenditures d Grassroots nontaxable amount e Grassroots ceiling amount (150% of line 2d, column (e)) f Grassroots lobbying expenditures
(a) 2008
321,977.
(b) 2009
304,330.
(c) 2010
289,860.
(d) 2011
(e) Total
306,641. 1,222,808. 1,834,212.
231,420.
184,555.
131,713.
179,294.
726,982.
80,494.
76,083.
72,465.
76,660.
305,702. 458,553.
57,855.
46,139.
32,928.
44,824.
181,746.
Schedule C (Form 990 or 990-EZ) 2011
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21 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America 58-1342181 Complete if the organization is exempt under section 501(c)(3) and has NOT filed Form 5768 (election under section 501(h)).
Schedule C (Form 990 or 990-EZ) 2011
Part II-B
For each "Yes" response to lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity. 1
a b c d e f g h i j 2a b c d
(a) Yes
(b) No
Amount
During the year, did the filing organization attempt to influence foreign, national, state or local legislation, including any attempt to influence public opinion on a legislative matter or referendum, through the use of: Volunteers? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ~ Media advertisements? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Mailings to members, legislators, or the public? ~~~~~~~~~~~~~~~~~~~~~~~~~ Publications, or published or broadcast statements? ~~~~~~~~~~~~~~~~~~~~~~ Grants to other organizations for lobbying purposes? ~~~~~~~~~~~~~~~~~~~~~~ Direct contact with legislators, their staffs, government officials, or a legislative body? ~~~~~~ Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ~~~~ Other activities? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Total. Add lines 1c through 1i ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? ~~~~ If "Yes," enter the amount of any tax incurred under section 4912 ~~~~~~~~~~~~~~~~ If "Yes," enter the amount of any tax incurred by organization managers under section 4912 ~~~ If the filing organization incurred a section 4912 tax, did it file Form 4720 for this year? ••••••
Part III-A Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6).
Yes
1 2 3
Page 3
Were substantially all (90% or more) dues received nondeductible by members? ~~~~~~~~~~~~~~~~~ Did the organization make only in-house lobbying expenditures of $2,000 or less? ~~~~~~~~~~~~~~~~ Did the organization agree to carry over lobbying and political expenditures from the prior year? •••••••••
No
1 2 3
Part III-B Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6) and if either (a) BOTH Part III-A, lines 1 and 2, are answered "No" OR (b) Part III-A, line 3, is answered "Yes." Dues, assessments and similar amounts from members ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Section 162(e) nondeductible lobbying and political expenditures (do not include amounts of political expenses for which the section 527(f) tax was paid). a Current year ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ b Carryover from last year ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ c Total ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 3 Aggregate amount reported in section 6033(e)(1)(A) notices of nondeductible section 162(e) dues ~~~~~~~~ 4 If notices were sent and the amount on line 2c exceeds the amount on line 3, what portion of the excess does the organization agree to carryover to the reasonable estimate of nondeductible lobbying and political expenditure next year? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 5 Taxable amount of lobbying and political expenditures (see instructions) ••••••••••••••••••••• 1 2
Part IV
Supplemental Information
1
2a 2b 2c 3
4 5
Complete this part to provide the descriptions required for Part I-A, line 1; Part I-B, line 4; Part I-C, line 5; Part II-A; and Part II-B, line 1. Also, complete this part for any additional information.
Schedule C (Form 990 or 990-EZ) 2011 132043 01-27-12
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22 2011.03050 Spina Bifida Association of SBA____1
SCHEDULE D (Form 990) Department of the Treasury Internal Revenue Service
2011
| Complete if the organization answered "Yes," to Form 990, Part IV, line 6, 7, 8, 9, 10, 11a, 11b, 11c, 11d, 11e, 11f, 12a, or 12b. | Attach to Form 990. | See separate instructions.
Name of the organization
Part I
OMB No. 1545-0047
Supplemental Financial Statements
Open to Public Inspection Employer identification number
Spina Bifida Association of America 58-1342181 Organizations Maintaining Donor Advised Funds or Other Similar Funds or Accounts. Complete if the organization answered "Yes" to Form 990, Part IV, line 6. (a) Donor advised funds
(b) Funds and other accounts
Total number at end of year ~~~~~~~~~~~~~~~ Aggregate contributions to (during year) ~~~~~~~~ Aggregate grants from (during year) ~~~~~~~~~~ Aggregate value at end of year ~~~~~~~~~~~~~ Did the organization inform all donors and donor advisors in writing that the assets held in donor advised funds are the organization's property, subject to the organization's exclusive legal control? ~~~~~~~~~~~~~~~~~~ 6 Did the organization inform all grantees, donors, and donor advisors in writing that grant funds can be used only for charitable purposes and not for the benefit of the donor or donor advisor, or for any other purpose conferring impermissible private benefit? •••••••••••••••••••••••••••••••••••••••••••• Part II Conservation Easements. Complete if the organization answered "Yes" to Form 990, Part IV, line 7. 1 2 3 4 5
Yes
No
Yes
No
1
Purpose(s) of conservation easements held by the organization (check all that apply). Preservation of land for public use (e.g., recreation or education) Preservation of an historically important land area Protection of natural habitat Preservation of a certified historic structure Preservation of open space
2
Complete lines 2a through 2d if the organization held a qualified conservation contribution in the form of a conservation easement on the last day of the tax year. Held at the End of the Tax Year a b c d
3 4 5 6 7 8 9
Total number of conservation easements ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2a Total acreage restricted by conservation easements ~~~~~~~~~~~~~~~~~~~~~~~~~~ 2b Number of conservation easements on a certified historic structure included in (a) ~~~~~~~~~~~~ 2c Number of conservation easements included in (c) acquired after 8/17/06, and not on a historic structure listed in the National Register ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2d Number of conservation easements modified, transferred, released, extinguished, or terminated by the organization during the tax year | Number of states where property subject to conservation easement is located | Does the organization have a written policy regarding the periodic monitoring, inspection, handling of violations, and enforcement of the conservation easements it holds? ~~~~~~~~~~~~~~~~~~~~~~~~~ Yes Staff and volunteer hours devoted to monitoring, inspecting, and enforcing conservation easements during the year | Amount of expenses incurred in monitoring, inspecting, and enforcing conservation easements during the year | $ Does each conservation easement reported on line 2(d) above satisfy the requirements of section 170(h)(4)(B)(i) and section 170(h)(4)(B)(ii)? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Yes In Part XIV, describe how the organization reports conservation easements in its revenue and expense statement, and balance sheet, and include, if applicable, the text of the footnote to the organization's financial statements that describes the organization's accounting for conservation easements.
Part III
No
No
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets.
Complete if the organization answered "Yes" to Form 990, Part IV, line 8.
1a If the organization elected, as permitted under SFAS 116 (ASC 958), not to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide, in Part XIV, the text of the footnote to its financial statements that describes these items. b If the organization elected, as permitted under SFAS 116 (ASC 958), to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide the following amounts relating to these items: (i) Revenues included in Form 990, Part VIII, line 1 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | $ (ii) Assets included in Form 990, Part X ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | $ 2 If the organization received or held works of art, historical treasures, or other similar assets for financial gain, provide the following amounts required to be reported under SFAS 116 (ASC 958) relating to these items: a Revenues included in Form 990, Part VIII, line 1 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | $ b Assets included in Form 990, Part X ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | $ LHA For Paperwork Reduction Act Notice, see the Instructions for Form 990. 132051 01-23-12
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Schedule D (Form 990) 2011
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23 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America 58-1342181 Page 2 Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)
Schedule D (Form 990) 2011
Part III
Using the organization's acquisition, accession, and other records, check any of the following that are a significant use of its collection items (check all that apply): a Public exhibition d Loan or exchange programs b Scholarly research e Other c Preservation for future generations 4 Provide a description of the organization's collections and explain how they further the organization's exempt purpose in Part XIV. 5 During the year, did the organization solicit or receive donations of art, historical treasures, or other similar assets to be sold to raise funds rather than to be maintained as part of the organization's collection? ••••••••••••• Yes No Part IV Escrow and Custodial Arrangements. Complete if the organization answered "Yes" to Form 990, Part IV, line 9, or reported an amount on Form 990, Part X, line 21. 3
1a Is the organization an agent, trustee, custodian or other intermediary for contributions or other assets not included on Form 990, Part X? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ b If "Yes," explain the arrangement in Part XIV and complete the following table:
Yes
No
Amount Beginning balance ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 1c Additions during the year ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 1d Distributions during the year ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 1e Ending balance ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 1f Did the organization include an amount on Form 990, Part X, line 21? ~~~~~~~~~~~~~~~~~~~~~~~~~ If "Yes," explain the arrangement in Part XIV. Part V Endowment Funds. Complete if the organization answered "Yes" to Form 990, Part IV, line 10. c d e f 2a b
Yes
No
(a) Current year (b) Prior year (c) Two years back (d) Three years back (e) Four years back 99,786. 61,252. 10,250. 10,000. Beginning of year balance ~~~~~~~ 255,000. 39,786. 50,000. Contributions ~~~~~~~~~~~~~~ -590. 1,122. 1,002. 250. Net investment earnings, gains, and losses 2,374. Grants or scholarships ~~~~~~~~~ Other expenditures for facilities and programs ~~~~~~~~~~~~~ f Administrative expenses ~~~~~~~~ 354,196. 99,786. 61,252. 10,250. g End of year balance ~~~~~~~~~~ 2 Provide the estimated percentage of the current year end balance (line 1g, column (a)) held as: .00 a Board designated or quasi-endowment | % 100.00 b Permanent endowment | % .00 c Temporarily restricted endowment | % The percentages in lines 2a, 2b, and 2c should equal 100%. 3a Are there endowment funds not in the possession of the organization that are held and administered for the organization by: Yes No X (i) unrelated organizations ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 3a(i) X (ii) related organizations ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 3a(ii) b If "Yes" to 3a(ii), are the related organizations listed as required on Schedule R? ~~~~~~~~~~~~~~~~~~~~~~ 3b 4 Describe in Part XIV the intended uses of the organization's endowment funds. Part VI Land, Buildings, and Equipment. See Form 990, Part X, line 10. 1a b c d e
Description of property
(a) Cost or other basis (investment)
(b) Cost or other basis (other)
(c) Accumulated depreciation
(d) Book value
1a Land ~~~~~~~~~~~~~~~~~~~~ b Buildings ~~~~~~~~~~~~~~~~~~ c Leasehold improvements ~~~~~~~~~~ 133,135. 103,955. 29,180. d Equipment ~~~~~~~~~~~~~~~~~ 66,598. 53,589. 13,009. e Other •••••••••••••••••••• 42,189. (Column (d) must equal Form 990, Part X, column (B), line 10(c).) Total. Add lines 1a through 1e. •••••••••••• | Schedule D (Form 990) 2011
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24 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America Part VII Investments - Other Securities. See Form 990, Part X, line 12.
Schedule D (Form 990) 2011
(a) Description of security or category (including name of security)
(b) Book value
58-1342181
Page 3
(c) Method of valuation: Cost or end-of-year market value
(1) Financial derivatives ~~~~~~~~~~~~~~~ (2) Closely-held equity interests ~~~~~~~~~~~ (3) Other (A) (B) (C) (D) (E) (F) (G) (H) (I) Total. (Col (b) must equal Form 990, Part X, col (B) line 12.) |
Part VIII Investments - Program Related. See Form 990, Part X, line 13. (a) Description of investment type
(b) Book value
(c) Method of valuation: Cost or end-of-year market value
(1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Total. (Col (b) must equal Form 990, Part X, col (B) line 13.) | Part IX Other Assets. See Form 990, Part X, line 15. (a) Description
(b) Book value
(1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Total. (Column (b) must equal Form 990, Part X, col (B) line 15.) •••••••••••••••••••••••••••• | Part X Other Liabilities. See Form 990, Part X, line 25. (a) Description of liability (b) Book value 1. (1) Federal income taxes 4,908. (2) Deferred rent (3) (4) (5) (6) (7) (8) (9) (10) (11) 4,908. Total. (Column (b) must equal Form 990, Part X, col (B) line 25.) ••••• | FIN 48 (ASC 740) Footnote. In Part XIV, provide the text of the footnote to the organization's financial statements that reports the organization's liability for uncertain tax positions under 2. FIN 48 (ASC 740). 132053 Schedule D (Form 990) 2011 01-23-12
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25 2011.03050 Spina Bifida Association of SBA____1
Spina Bifida Association of America 58-1342181 Page 4 Part XI Reconciliation of Change in Net Assets from Form 990 to Audited Financial Statements 3,423,303. 1 Total revenue (Form 990, Part VIII, column (A), line 12) ~~~~~~~~~~~~~~~~~~~~~~ 1 3,137,333. 2 Total expenses (Form 990, Part IX, column (A), line 25) ~~~~~~~~~~~~~~~~~~~~~~ 2 285,970. 3 Excess or (deficit) for the year. Subtract line 2 from line 1 ~~~~~~~~~~~~~~~~~~~~~ 3 -8,276. 4 Net unrealized gains (losses) on investments ~~~~~~~~~~~~~~~~~~~~~~~~~~~ 4
Schedule D (Form 990) 2011
5 6 7 8 9 10
Donated services and use of facilities ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Investment expenses ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Prior period adjustments ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Other (Describe in Part XIV.) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Total adjustments (net). Add lines 4 through 8 ~~~~~~~~~~~~~~~~~~~~~~~~~~~ Excess or (deficit) for the year per audited financial statements. Combine lines 3 and 9 •••••••
5 6 7 8 9 10
-8,276. 277,694.
Part XII Reconciliation of Revenue per Audited Financial Statements With Revenue per Return 1 2 a b c d e 3 4 a b c 5
Total revenue, gains, and other support per audited financial statements ~~~~~~~~~~~~~~~~~~~ 1 Amounts included on line 1 but not on Form 990, Part VIII, line 12: -8,276. Net unrealized gains on investments ~~~~~~~~~~~~~~~~~~~~~~ 2a 710,853. Donated services and use of facilities ~~~~~~~~~~~~~~~~~~~~~~ 2b Recoveries of prior year grants ~~~~~~~~~~~~~~~~~~~~~~~~~ 2c Other (Describe in Part XIV.) ~~~~~~~~~~~~~~~~~~~~~~~~~~ 2d Add lines 2a through 2d ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2e Subtract line 2e from line 1 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 3 Amounts included on Form 990, Part VIII, line 12, but not on line 1: 4,403. Investment expenses not included on Form 990, Part VIII, line 7b ~~~~~~~~ 4a Other (Describe in Part XIV.) ~~~~~~~~~~~~~~~~~~~~~~~~~~ 4b Add lines 4a and 4b ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 4c Total revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ••••••••••••••••• 5
1 2 a b c d e 3 4 a b c 5
Total expenses and losses per audited financial statements ~~~~~~~~~~~~~~~~~~~~~~~~~~ 1 Amounts included on line 1 but not on Form 990, Part IX, line 25: 710,853. Donated services and use of facilities ~~~~~~~~~~~~~~~~~~~~~~ 2a Prior year adjustments ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2b Other losses ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2c Other (Describe in Part XIV.) ~~~~~~~~~~~~~~~~~~~~~~~~~~ 2d Add lines 2a through 2d ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2e Subtract line 2e from line 1 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 3 Amounts included on Form 990, Part IX, line 25, but not on line 1: 4,403. Investment expenses not included on Form 990, Part VIII, line 7b ~~~~~~~~ 4a Other (Describe in Part XIV.) ~~~~~~~~~~~~~~~~~~~~~~~~~~ 4b Add lines 4a and 4b ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 4c Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) •••••••••••••••• 5
Part XIII Reconciliation of Expenses per Audited Financial Statements With Expenses per Return
4,121,477.
702,577. 3,418,900.
4,403. 3,423,303. 3,843,783.
710,853. 3,132,930.
4,403. 3,137,333.
Part XIV Supplemental Information
Complete this part to provide the descriptions required for Part II, lines 3, 5, and 9; Part III, lines 1a and 4; Part IV, lines 1b and 2b; Part V, line 4; Part X, line 2; Part XI, line 8; Part XII, lines 2d and 4b; and Part XIII, lines 2d and 4b. Also complete this part to provide any additional information.
Part V, line 4: To fund scholarships for people with Spina Bifida and
grant to promote the prevention and cure of Spina Bifida and to improve the lives of those living with Spina Bifida.
Part X, Line 2: SBA performed an evaluation of its uncertain tax positions for the year ended December 31, 2011, and determined that there were no matters that would require recognition in the financial statements or that may have any effect on its tax-exempt status. 132054 01-23-12
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26 2011.03050 Spina Bifida Association of SBA____1
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SCHEDULE I (Form 990) Department of the Treasury Internal Revenue Service
Name of the organization Part I
Grants and Other Assistance to Organizations, Governments, and Individuals in the United States
2011
Complete if the organization answered "Yes" to Form 990, Part IV, line 21 or 22. | Attach to Form 990.
Open to Public Inspection Employer identification number
Spina Bifida Association of America
58-1342181
General Information on Grants and Assistance
Does the organization maintain records to substantiate the amount of the grants or assistance, the grantees' eligibility for the grants or assistance, and the selection X Yes criteria used to award the grants or assistance? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 2 Describe in Part IV the organization's procedures for monitoring the use of grant funds in the United States. Part II Grants and Other Assistance to Governments and Organizations in the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 21, for any recipient that received more than $5,000. Check this box if no one recipient received more than $5,000. Part II can be duplicated if additional space is needed••••••••• | (f) Method of 1 (a) Name and address of organization (b) EIN (c) IRC section (d) Amount of (e) Amount of (g) Description of (h) Purpose of grant valuation (book, or government if applicable cash grant non-cash non-cash assistance or assistance FMV, appraisal, assistance other) 1
Children's Hospital of LA 4650 Sunset Boulevard, Mail Stop #9 Los Angeles, CA 90027 95-1690977 501(c)(3) SBA of Cincinnati 644 Linn Street, Suite 635 Cincinnati, OH 45203 University of Colorado Denver Mail Stop F428, Department 238 Denver, CO 80291 University of Alabama at Birmningham - 701 South 20th Street, AB1170P - Birmingham, AL 03294
37,500.
0.
Spina Bifida EMR Pilot Award
5,000.
0.
Teleprogram Contract Award
84-6000555 N/A
37,500.
0.
Spina Bifida EMR Pilot Award
63-6005396 N/A
37,500.
0.
Spina Bifida EMR Pilot Award
31-1031092 501(c)(3)
No
4. 2 Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | 0. 3 Enter total number of other organizations listed in the line 1 table •••••••••••••••••••••••••••••••••••••••••••••••••• | LHA For Paperwork Reduction Act Notice, see the Instructions for Form 990. Schedule I (Form 990) (2011) 132101 01-27-12
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Spina Bifida Association of America Schedule I (Form 990) (2011) Part III Grants and Other Assistance to Individuals in the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 22. Part III can be duplicated if additional space is needed. (a) Type of grant or assistance
(b) Number of recipients
(c) Amount of cash grant
(d) Amount of noncash assistance
Young Investigator Grant
1
25,150.
0.
Scholarships
7
17,000.
0.
Part IV
(e) Method of valuation (book, FMV, appraisal, other)
58-1342181
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(f) Description of non-cash assistance
Supplemental Information. Complete this part to provide the information required in Part I, line 2, and any other additional information.
Schedule I, Part I, Line 2: The Organization performs a financial and program review for each grant disbursement.
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Schedule I (Form 990) (2011)
SCHEDULE J (Form 990) Department of the Treasury Internal Revenue Service
Name of the organization
Part I
Compensation Information
For certain Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees | Complete if the organization answered "Yes" to Form 990, Part IV, line 23. | Attach to Form 990. | See separate instructions.
Spina Bifida Association of America Questions Regarding Compensation
OMB No. 1545-0047
2011
Open to Public Inspection Employer identification number
58-1342181
Yes
No
1a Check the appropriate box(es) if the organization provided any of the following to or for a person listed in Form 990, Part VII, Section A, line 1a. Complete Part III to provide any relevant information regarding these items. First-class or charter travel Housing allowance or residence for personal use Travel for companions Payments for business use of personal residence Tax indemnification and gross-up payments Health or social club dues or initiation fees Discretionary spending account Personal services (e.g., maid, chauffeur, chef) b If any of the boxes on line 1a are checked, did the organization follow a written policy regarding payment or reimbursement or provision of all of the expenses described above? If "No," complete Part III to explain ~~~~~~~~~~~ 2 Did the organization require substantiation prior to reimbursing or allowing expenses incurred by all officers, directors, trustees, and the CEO/Executive Director, regarding the items checked in line 1a? ~~~~~~~~~~~~~~~~~~~~~ 3
1b 2
Indicate which, if any, of the following the filing organization used to establish the compensation of the organization's CEO/Executive Director. Check all that apply. Do not check any boxes for methods used by a related organization to establish compensation of the CEO/Executive Director. Explain in Part III. X Compensation committee Written employment contract X Independent compensation consultant X Compensation survey or study X Approval by the board or compensation committee Form 990 of other organizations
During the year, did any person listed in Form 990, Part VII, Section A, line 1a, with respect to the filing organization or a related organization: a Receive a severance payment or change-of-control payment? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ b Participate in, or receive payment from, a supplemental nonqualified retirement plan? ~~~~~~~~~~~~~~~~~~~~ c Participate in, or receive payment from, an equity-based compensation arrangement?~~~~~~~~~~~~~~~~~~~~ If "Yes" to any of lines 4a-c, list the persons and provide the applicable amounts for each item in Part III.
4
4a 4b 4c
X X X
Only section 501(c)(3) and 501(c)(4) organizations must complete lines 5-9. For persons listed in Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any compensation contingent on the revenues of: X 5a a The organization? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ X 5b b Any related organization? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If "Yes" to line 5a or 5b, describe in Part III. 6 For persons listed in Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any compensation contingent on the net earnings of: X 6a a The organization? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ X 6b b Any related organization? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If "Yes" to line 6a or 6b, describe in Part III. 7 For persons listed in Form 990, Part VII, Section A, line 1a, did the organization provide any non-fixed payments X 7 not described in lines 5 and 6? If "Yes," describe in Part III ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 8 Were any amounts reported in Form 990, Part VII, paid or accrued pursuant to a contract that was subject to the X 8 initial contract exception described in Regulations section 53.4958-4(a)(3)? If "Yes," describe in Part III ~~~~~~~~~~~ 9 If "Yes" to line 8, did the organization also follow the rebuttable presumption procedure described in 9 Regulations section 53.4958-6(c)? ••••••••••••••••••••••••••••••••••••••••••••• LHA For Paperwork Reduction Act Notice, see the Instructions for Form 990. Schedule J (Form 990) 2011 5
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Spina Bifida Association of America 58-1342181 Schedule J (Form 990) 2011 Part II Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees. Use duplicate copies if additional space is needed.
Page 2
For each individual whose compensation must be reported in Schedule J, report compensation from the organization on row (i) and from related organizations, described in the instructions, on row (ii). Do not list any individuals that are not listed on Form 990, Part VII. Note. The sum of columns (B)(i)-(iii) for each listed individual must equal the total amount of Form 990, Part VII, Section A, line 1a, applicable column (D) and (E) amounts for that individual. (B) Breakdown of W-2 and/or 1099-MISC compensation (i) Base compensation
(A) Name
1
Cindy Brownstein
2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 132112 01-23-12
(i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii) (i) (ii)
166,067. 0.
(ii) Bonus & incentive compensation
(iii) Other reportable compensation
0. 0.
0. 0.
30
(C) Retirement and other deferred compensation
4,931. 0.
(D) Nontaxable benefits
4,640. 0.
(E) Total of columns (B)(i)-(D)
(F) Compensation reported as deferred in prior Form 990
175,638. 0.
0. 0.
Schedule J (Form 990) 2011
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SCHEDULE O (Form 990 or 990-EZ)
2011
Complete to provide information for responses to specific questions on Form 990 or 990-EZ or to provide any additional information. | Attach to Form 990 or 990-EZ.
Department of the Treasury Internal Revenue Service
Name of the organization
OMB No. 1545-0047
Supplemental Information to Form 990 or 990-EZ
Spina Bifida Association of America
Open to Public Inspection Employer identification number
58-1342181
Form 990, Part III, Line 1, Description of Organization Mission: training of professionals involved in the treatment of Spina Bifida.
Form 990, Part III, Line 4d, Other Program Services: National Resource Center:
The Spina Bifida Association's National
Resource Center on Spina Bifida provides high quality, confidential information and referral services.
The National Resource Center
provides families and individuals with critical information at a time of great need and is the only clearinghouse of information exclusively dedicated to Spina Bifida. The Center responds to approximately 15,000 people nationwide with answers to questions about health care, education, employment, prevention, and aging with Spina Bifida. Expenses $ 210,067.
Education Programs:
including grants of $ 0.
Revenue $ 0.
The Spina Bifida Association's education programs
provide parents, caregivers and persons living with Spina Bifida with tools and resources at critical points in development and transition. Education and informational resources were provided to over 4,900 people with Spina Bifida, parents, and caregivers. Expenses $ 189,196.
Advocacy Program:
including grants of $ 0.
Revenue $ 19,141.
The Spina Bifida Association's advocacy program is a
multi-prong approach that includes grass tops/grassroots visits. Over 100 in-person visits to Members of Congress, federal officials and agencies were made. Grassroots post cards, letters and e-mails in excess of 2000 were delivered on behalf of people living with Spina LHA For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ. 132211 01-23-12
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Schedule O (Form 990 or 990-EZ) (2011) Name of the organization
Page 2 Employer identification number
Spina Bifida Association of America
58-1342181
Bifida. Expenses $ 179,294.
Research:
including grants of $ 0.
Revenue $ 0.
The Spina Bifida Association's Young Investigators Program
was established to attract talented young researchers to the field of Spina Bifida.
SBA provided four young investigators with grants
totaling $75,000. Expenses $ 277,665.
including grants of $ 137,544.
Web-based Education and Awareness:
Revenue $ 0.
Each year, over 450,000 distinct
visitors view information and education material supplied via the Internet through eight separate Web sites. In addition, over 12,000 people subscribe to the Spina Bifida Association's two electronic newsletters providing up-to date information on live-changing information in the care for people living with Spina Bifida and research on the treatment and prevention of this complex birth defect. Another component of the Spina Bifida Association's Web-based education and Awareness program includes e-Communities and Social Media sites to offer interaction with members of the Spina Bifida community nationwide.
Over 18,000 people participated in our communities and
social networking efforts. Expenses $ 45,200.
including grants of $ 5,000.
Revenue $ 0.
Prevention Program:
The Spina Bifida Association's efforts to prevent
Spina Bifida include creative community outreach projects like a Spanish-speaking PSA on television and radio in markets with high Hispanic populations. Over 10 million people were reached with the message about the importance of taking folic acid to prevent Spina 132212 01-23-12
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32 2011.03050 Spina Bifida Association of SBA____1
Schedule O (Form 990 or 990-EZ) (2011) Name of the organization
Spina Bifida Association of America
Page 2 Employer identification number
58-1342181
Bifida. Expenses $ 37,257.
Scholarships:
including grants of $ 0.
Revenue $ 0.
The Spina Bifida Association provides young people with
Spina Bifida scholarships to post-secondary educational institutions to help them achieve success and independence. Expenses $ 26,620.
including grants of $ 17,000.
Revenue $ 0.
Form 990, Part VI, Section A, line 6: Each chapter of the SBA which meets the affiliation standards of the organization and is in good standing at the time of each relevant meeting shall be a member.
Form 990, Part VI, Section A, line 7a: Delegates are appointed by each chapter. These delegates approve the new members of the Board of Directors and the slate of officers of the board.
Form 990, Part VI, Section A, line 7b: Any changes in the organization's by-laws are required to be approved by a majority of the chapter delegates present at the annual board meeting.
Form 990, Part VI, Section B, line 11: The Form 990 is reviewed by the Controller, Chief Operating Officer, and Chief Executive Officer and then is given to the Audit Committee for review, discussion and approval. A copy of the form is provided to the entire Board of Directors prior to filing.
Form 990, Part VI, Section B, Line 12c: Annual written confirmation is required from all Board Members who identify all potential conflicts of interest. The confirmation form states that Board members for whom there is 132212 01-23-12
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Schedule O (Form 990 or 990-EZ) (2011) Name of the organization
Page 2 Employer identification number
Spina Bifida Association of America
58-1342181
a conflict on a given issue will not be involved in any discussions nor votes on areas of conflict. The annual Conflict of Interest (COI) statements are reviewed by the board Chair and the CEO and, if any COI items are identified they will be brought the Board for review. In addition, Board members are expected to identify any potential conflicts that may arise throughout the year and after the COI statements are signed.
Form 990, Part VI, Section B, Line 15a: There is a formal review of the Chief Exective Officer (CEO) by the Board. A formal review is made by the CEO of all other employees.
The Board employs a combination of performance
evaluation and reviews both local and national compensation surveys to establish the compensation of the Chief Executive Officer.
Similarly, the
Chief Executive Officer employs performance reviews and documentation on regional compensation studies to review all staff including the Chief Operating Officer and Controller.
All staff performance reviews and
compensation changes are presented to the CEO prior to finalizing for written approval.
Form 990, Part VI, Line 17, List of States receiving copy of Form 990: AL,AK,AR,AZ,CA,CO,CT,FL,GA,IL,KS,KY,LA,ME,MD,MA,MI,MN,MS,ND,NH,NJ,NM,NY,NC OH,OK,OR,PA,RI,SC,TN,UT,VA,WA,WI,WV
Form 990, Part VI, Section C, Line 19: The Organization makes its governing documents, conflict of interest policy, and financial statements available to the public on their website.
Form 990, Part XI, line 5, Changes in Net Assets: Net unrealized losses on investments: 132212 01-23-12
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34 2011.03050 Spina Bifida Association of SBA____1
Schedule O (Form 990 or 990-EZ) (2011) Name of the organization
Spina Bifida Association of America
Form 990, Part I, Line 5 & Part V, Line 2A:
Page 2 Employer identification number
58-1342181
The Association has
contracted with a professional employer organization, Administaff, to serve as the employer of record for the Association's employees.
As
such, Administaff is responsible for tax filings related to employees. For this reason, the Association's 990 is accurate but appears inconsistent in reporting employee compensation in Part VII of the form and at the same time, reporting 0 employees on Part I, Line 5 and Part V, Line 2A.
Administaff issued 17 W-2's in 2011 for Association
employees.
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35 2011.03050 Spina Bifida Association of SBA____1
