Spina Bifida Association of America
Public records show a registered, tax-exempt organization in good standing.
What it says it does
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.
- Income
- $1.9 million
- Spending
- $1.9 million
- Spent on programs
- 79%
- Reserves
- 2.9 months of spending
- Largest source of income
- donations and private grants, 50%
- Employees
- 11
- Volunteers
- 715
- Highest pay
- $163,111, president and ceo
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Good: 70 out of 100. Higher than 31% of charities in its peer group (diseases, $1m to $10m).
Reserves
10 of 35Spendable reserves would cover 2.9 months of spending.
Debt
20 of 20It owes 7% of what it owns.
Living within its means
15 of 15Income exceeded spending by 3% of income.
Income trend
10 of 15Income fell 2% on the year before.
Spending floor
15 of 1579% of spending went to programs and raising each dollar of donations cost 16 cents.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 61% of charities in its peer group (diseases, $1m to $10m).
Independent board
25 of 2516 of 16 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (4)
- $503,936 spent. 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.
- $499,748 spent. EDUCATIONSBA DELIVERS VITAL EDUCATION AND SUPPORT THROUGH ITS NATIONAL RESOURCE CENTER, EXPERT-LED WEBINARS, AND PEER-TO-PEER PROGRAMS. SBA'S ONLINE EDUCATION SERIES AND "ASK THE EXPERT" SESSIONS OFFER ACCESSIBLE, EVIDENCE-BASED GUIDANCE FOR INDIVIDUALS AND FAMILIES. THE NATIONAL RESOURCE CENTER PROVIDES CONFIDENTIAL REFERRALS AND A COMPREHENSIVE LIBRARY OF SPINA BIFIDA-SPECIFIC MATERIALS, INCLUDING TOOLS FOR PARENTING AND TRANSITION PLANNING. SBA'S WEBSITE AND E-COMMUNITIES CONNECT THOUSANDS WITH TRUSTED INFORMATION AND PEER SUPPORT. THE ANNUAL SPINA BIFIDA AWARENESS MONTH CAMPAIGN REACHES NEARLY ONE MILLION PEOPLE. SBA ALSO SUPPORTS EXPECTANT PARENTS AND HEALTHCARE PROVIDERS THROUGH MENTORING AND PROFESSIONAL LISTSERVS, BUILDING KNOWLEDGE AND COMMUNITY ACROSS THE LIFESPAN.
- $161,505 spent. PUBLIC POLICYSBA EMPOWERS INDIVIDUALS TO ADVOCATE FOR POLICIES THAT IMPROVE THE LIVES OF THOSE WITH SPINA BIFIDA. THROUGH ITS GRASSROOTS ADVOCACY NETWORK, PARTICIPANTS ENGAGE FEDERAL AND STATE OFFICIALS ON KEY ISSUES SUCH AS HEALTHCARE ACCESS, MEDICAL DEVICE INNOVATION, AND DISABILITY RIGHTS. SBA'S ANNUAL TEAL ON THE HILL EVENT BRINGS ADVOCATES TO CAPITOL HILL, HELPING SECURE FEDERAL FUNDING INCREASES FOR THE NATIONAL SPINA BIFIDA PROGRAM AT THE CDC.SBA CHAMPIONS SUSTAINED INVESTMENT IN SPINA BIFIDA RESEARCH THROUGH PARTNERSHIPS WITH THE CDC AND NIH, ADVANCING PROGRAMS LIKE THE NSBPR, SBCCN, AND UMPIRE PROTOCOL. SBA ALSO CO-FOUNDED THE NATIONAL PARTNERSHIP FOR PEDIATRIC TO ADULT CARE TRANSITION (NPPACT) TO ADDRESS SYSTEMIC GAPS IN THE TRANSITION TO ADULT HEALTHCARE FROM PEDIATRIC HEALTHCARE. THE ORGANIZATION COLLABORATES WITH NATIONAL COALITIONS TO PROMOTE ACCESS TO CARE, ASSISTIVE TECHNOLOGY, AND REHABILITATION SERVICES.
- $304,991 spent. CHAPTER DEVELOPMENT AND OTHERTHE ASSOCIATION PROMOTES THE GROWTH AND DEVELOPMENT OF ITS 14 CHAPTERS THROUGH TECHNICAL ASSISTANCE IN CAPACITY BUILDING, COMMUNICATIONS, PROGRAMMATIC RESOURCES AND GRANTS.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since December 1973.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.
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