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CHARITY REVIEW
Issued: January 2025 Expires: January 2027

Spina Bifida Association of America

Standards Not Met
Standards Not Met
18
(800) 621-3141
1600 Wilson Boulevard, Suite 800
Arlington, VA, 22209
http://www.spinabifidaassociation.org/
📄 Full Report 🖨️ Print 📋 BBB Charity Standards

Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. Complaints

Spina Bifida Association of America does not meet the following 1 Standards for Charity Accountability:

Standard 18 (Privacy for Written Appeals & Internet Privacy)
Address privacy concerns of donors by (a) providing in written appeals, at least annually, a means (e.g., such as a check off box) for both new and continuing donors to inform the charity if they do not want their name and address shared outside the organization, (b) providing a clear, prominent and easily accessible privacy policy on any of its websites that tells visitors (i) what information, if any, is being collected about them by the charity and how this information will be used, (ii) how to contact the charity to review personal information collected and request corrections, (iii) how to inform the charity (e.g., a check off box) that the visitor does not wish his/her personal information to be shared outside the organization, and (iv) what security measures the charity has in place to protect personal information.

SBAA does not meet this Standard because the privacy policy on the organization's website, http://www.spinabifidaassociation.org/, does not indicate:

  • What security measures are in place to protect personal information that is collected.

The BBB Wise Giving Alliance requested but did not receive complete information from the organization and is unable to verify the organization's compliance with the following Standard(s) for Charity Accountability: 19

Spina Bifida Association of America meets the remaining 18 Standards for Charity Accountability.

Stated Purpose:
"to build a better and brighter future for all those impacted by Spina Bifida."

Year, State Incorporated:
1973, WI

Spina Bifida Association of America (SBAA) reports that it is committed to helping those affected with Spina Bifida live longer, healthier lives through research, education and support, clinical care, network building, and advocacy. The organization leads efforts to improve clinical care for all people living with Spina Bifida through expanding and strengthening its relationship with clinics and health care providers, ensuring guidelines are understood and being implemented by clinics and care providers, using research data to understand differences in patient outcomes in different clinical settings, improving the transition of care from pediatric clinics to adult care systems, inreasing access to adult care, and networking with other organizations to identify and build on shared education and advocacy priorities. SBAA provides one-on-one information and guidance for families, individuals, providers, and others whose lives have been impacted by Spina Bifida. Additionally, the organization offers in-person and virtual programs featuring medical experts, parents, and adults with Spina Bifida.

For the year ended December 31, 2023, Spina Bifida Association of America's program expenses were:

Education $1,272,520
Research $691,263
Chapter development $448,594
Government relations $197,941
Information and referral $74,979
Total Program Expenses $2,685,297

Chief Executive
Sara Struwe, President and Chief Executive Officer

Compensation*
$175,293

Chair of the Board
Nancy Gore

Chair's Profession / Business Affiliation
Retired

Board Size
14

Paid Staff Size
13

*2022 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Direct mail appeals, Radio, Special events, Telemarketing, Foundation grants, Print advertisements, Corporate solicitation

Fundraising costs were 10% of related contributions. (Related contributions, which totaled $2,430,597, are donations received as a result of fundraising activities.)

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.

The following information is based on Spina Bifida Association of America's audited financial statements for the year ended December 31, 2023.

Source of Funds
Government grants $921,475
Contributions $649,675
Contributions - SBACFL $436,760
Conference and meetings $331,360
Special events $292,329
Federated fundraising organizations $70,003
Investment income $59,181
Corporate contributions $56,100
Other income $38,114
Corporate chapter revenue $4,333
Bequests $4,255
Total Income $2,863,585

Programs: 85% Fundraising: 8% Administrative: 8%

Total Income $2,863,585
Total expenses: $3,173,770
  Program expenses $2,685,297
  Fundraising expenses $240,587
  Administrative expenses $247,886
  Other expenses $0
Income in Excess of Expenses $-310,185
Beginning Net Assets $1,014,225
Other Changes In Net Assets $0
Ending Net Assets $704,040
Total Liabilities $315,468
Total Assets $1,019,508

An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the International Association of Better Business Bureaus.

This report is not to be used for fundraising or promotional purposes.

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Report completed by:
BBB Wise Giving Alliance