Spina Bifida Association of America

Nonprofit profile at a glance

EIN
581342181
IRS 990 coverage
2012–2025
Forms available
Form 990 2025
Location
Alexandria, VA, USA
Phone
2026184750
Rating
72
Verdict
SUPPORTED
Rating confidence
Moderate

Official website

Reported finances

Revenue
$1,911,274
Expenses
$1,859,428
Assets
$769,226
Liabilities
$54,347

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

18 people listed

Executive titles in this filing

  • SARA STRUWE (PRESIDENT AND CEO)

Highest reported compensation

  • SARA STRUWE (PRESIDENT AND CEO): $163,111 total reported compensation
  • GLENRAE BROWN (CHIEF FINANCIAL OFFICER): $140,508 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

To provide information about the birth defect of spina bifida and its related conditions and support to individuals living with it through education, advocacy, research, and service; to facilitate research into the causes, effects, and treatment of spina bifida; and to educate and train the professionals involved in the treatment of spina bifida.

What it reported doing in 2025

Research and clinical carethe spina bifida association (sba) leads national efforts to improve healthcare and quality of life for individuals with spina bifida through research, advocacy, and clinical support. With support from the cdc, sba coordinates the spina bifida collaborative care network (sbccn) to connect clinics, researchers, and families with best practices. Sba developed and maintains the guidelines for the care of people with spina bifida, a comprehensive, evidence-based framework for multidisciplinary care. Sba also collaborates with the national spina bifida patient registry (nsbpr), contributing to clinical research and data-driven quality improvement across 20 clinics and nearly 12,000 patients.in response to critical health needs, sba co-developed the umpire protocol for early kidney protection and the lifespan bowel management protocol to guide lifelong bowel care. Sba's research agenda, shaped by over 1,600 community members, targets six key areas including incontinence, mental health, and self-management. Ongoing advocacy initiatives address access to essential medical supplies and services, including catheters and trans anal irrigation. Sba also is the lynchpin for research efforts in the clinical community. Sba supports research recruitment, identifies evidence gaps, and advocates for access to critical medical supplies and services.sba also leads the annual clinical care meeting and is advancing adult care by building provider networks and specialty-specific training models to ensure continuity of care into adulthood.

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and revenue has declined or grown slowly.

Rating breakdown

  • Financial Efficiency: 71
  • Transparency & Controls: 70
  • Accountability: 95
  • Sustainability: 32
  • Growth: 40

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 77.1%; rating input score 77
  • Program expense ratio: 79.1%; rating input score 79
  • Fundraising efficiency: $6.17 raised per $1 spent on fundraising; rating input score 21; 21st percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 1 of 6 controls in place; rating input score 17
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Pass
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 8 of 9 controls in place; rating input score 89
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 2.7%; rating input score 39; 39th percentile among comparable filings
  • Total-asset coverage ratio: 0.41; rating input score 21; 21st percentile among comparable filings
  • Liabilities to assets ratio: 0.07; rating input score 39; 39th percentile among comparable filings
  • Officer compensation ratio: 16.3%; rating input score 22; 22nd percentile among comparable filings

Growth

  • Program expense growth: 3% per year; rating input score 100; 27th percentile among comparable filings
  • Revenue growth: -0.4% per year; rating input score 0; 10th percentile among comparable filings
  • Asset growth: -3.8% per year; rating input score 0; 7th percentile among comparable filings

Details

  • Where the money goes: 77.1% of revenue deployed · 79.1% of spending went to programs
  • Governance: 16 of 16 board members independent · 8 of 9 filing controls reported
  • Programs: 4 filed program accomplishments · $1.5M in reported program spending
  • Leadership: top reported pay $163K · 18 people listed · 1 of 6 pay-setting controls reported
  • Consistency: 31 of 31 current checks pass
  • Schedules: 6 filed schedules · includes major donors and executive pay
  • Filing history: 13 filing years from 2012 to 2025
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Financial Efficiency: Fundraising efficiency scored 21/100.
  • High — Growth: Revenue growth scored 0/100.
  • Moderate — Sustainability: Operating margin scored 39/100.
  • High — Sustainability: Total-asset coverage ratio scored 21/100.
  • High — Growth: Asset growth scored 0/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • High — Sustainability: Officer compensation ratio scored 22/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 39/100.