Nonprofit · EIN 58-1342181
SPINA BIFIDA ASSOCIATION OF AMERICA
Tax-exempt · ALEXANDRIA, VA 22314
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $1,911,274 | $1,859,428 | $51,846 | $769,226 | $54,347 | $714,879 |
| December 31, 2024 | 990 | $1,942,830 | $2,045,054 | -$102,224 | $714,042 | $80,856 | $633,186 |
| December 31, 2023 | 990 | $2,834,510 | $3,175,550 | -$341,040 | $1,019,508 | $315,468 | $704,040 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $1,465,331
- of which government grants
- $516,476
- Program service revenue
- $421,831
- Investment income
- $10,824
- Net gain from sales of assets
- $492
- Other revenue
- $13,288
Expenses
- Grants and similar amounts paid
- $0
- Compensation of officers, directors and key employees
- $304,382
- Other salaries and wages
- $536,048
- Salaries, compensation and benefits (total)
- $1,139,292
- Professional fundraising fees
- $0
- Accounting fees
- $20,603
- Occupancy
- $45,462
- Travel
- $22,798
- Depreciation
- $1,839
- Program services (functional)
- $1,470,180
- Management and general (functional)
- $151,783
- Fundraising (functional)
- $237,465
Balance sheet and other
- Total assets, start of year
- $714,042
- Total assets, end of year
- $769,226
- Total liabilities, end of year
- $54,347
- Net assets, end of year
- $714,879
- Land, buildings and equipment
- $3,710
- Publicly traded securities
- $325,558
- Net assets without donor restrictions
- $455,104
- Net assets with donor restrictions
- $259,775
- Gross receipts
- $2,034,312
- Employees
- 11
- Volunteers
- 715
- Year formed
- 1973
- State of legal domicile
- WI
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| SARA STRUWE | PRESIDENT AND CEO Officer | 37.5 | $135,044 | $28,067 |
| GLENRAE BROWN | CHIEF FINANCIAL OFFICER Officer | 37.5 | $112,065 | $28,443 |
| NANCY GORE | CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| MARIE THOMING PE | CHAIR-ELECT Trustee or director, Officer | 2 | $0 | $0 |
| JAMES ARMIJO | SECRETARY/TREASURER Trustee or director, Officer | 2 | $0 | $0 |
| ROBIN M BOWMAN MD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| JOSEPH EVANS | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ELLEN FREMION MD FAAP FACP | DIRECTOR Trustee or director | 2 | $0 | $0 |
| HEIDI SIEGEL | DIRECTOR Trustee or director | 2 | $0 | $0 |
| DOUGLAS SOROCCO | DIRECTOR Trustee or director | 2 | $0 | $0 |
| SHELIAH ROY | DIRECTOR Trustee or director | 2 | $0 | $0 |
| KATHRYN ANN NAVARETTE SMITH RN MN | DIRECTOR Trustee or director | 2 | $0 | $0 |
| BRYAN VODICKA | DIRECTOR Trustee or director | 2 | $0 | $0 |
| DAWNE WIDENER-BURROWS | DIRECTOR Trustee or director | 2 | $0 | $0 |
| MELISSA WIEGEL | DIRECTOR Trustee or director | 2 | $0 | $0 |
3 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| JOHN WIENER MD | DIRECTOR Trustee or director | 2 | $0 |
| ERIC TOBIN | DIRECTOR Trustee or director | 2 | $0 |
| ANSHUL VARMA | DIRECTOR Trustee or director | 2 | $0 |
990 for the year ended December 31, 2024: 19 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| SARA STRUWE | PRESIDENT AND CEO Officer | 37.5 | $139,468 | $24,250 |
| GLENRAE BROWN | CHIEF FINANCIAL OFFICER Officer | 37.5 | $113,972 | $24,304 |
| MICHAEL WOOD | CHIEF OPERATING OFFICER Officer | 37.5 | $95,445 | $19,884 |
| NANCY GORE | CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| MARIA BOURNIAS ESQ CPA | IMMEDIATE PAST CHAIR Trustee or director, Officer | 2 | $0 | $0 |
| ERIC TOBIN | CHAIR-ELECT Trustee or director, Officer | 2 | $0 | $0 |
| ANSHUL VARMA | SECRETARY/TREASURER Trustee or director, Officer | 2 | $0 | $0 |
| MARIE THOMING PE | MEMBER AT LARGE Trustee or director | 2 | $0 | $0 |
| JAMES ARMIJO | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ROBIN M BOWMAN MD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| TRACY DINUNZIO | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ELLEN FREMION MD FAAP FACP | DIRECTOR Trustee or director | 2 | $0 | $0 |
| CHASE PHILLIPS | DIRECTOR Trustee or director | 2 | $0 | $0 |
| SHELIAH ROY | DIRECTOR Trustee or director | 2 | $0 | $0 |
| KATHRYN ANN NAVARETTE SMITH RN MN | DIRECTOR Trustee or director | 2 | $0 | $0 |
| BRYAN VODICKA | DIRECTOR Trustee or director | 2 | $0 | $0 |
| DAWNE WIDENER-BURROWS | DIRECTOR Trustee or director | 2 | $0 | $0 |
| MELISSA WIEGEL | DIRECTOR Trustee or director | 2 | $0 | $0 |
| JOHN WIENER MD | DIRECTOR Trustee or director | 2 | $0 | $0 |
990 for the year ended December 31, 2023: 17 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| SARA STRUWE | PRESIDENT AND CEO Officer | 37.5 | $141,598 | $21,879 |
| GLENRAE BROWN | CHIEF FINANCIAL OFFICER Officer | 37.5 | $114,488 | $21,709 |
| MICHAEL WOOD | CHIEF OPERATING OFFICER Officer | 37.5 | $113,221 | $21,709 |
| MARIA BOURNIAS ESQ CPA | CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| MICHAEL HARTY JR | IMMEDIATE PAST CHAIR Trustee or director, Officer | 2 | $0 | $0 |
| NANCY GORE | CHAIR-ELECT Trustee or director, Officer | 2 | $0 | $0 |
| ANSHUL VARMA | SECRETARY/TREASURER Trustee or director, Officer | 2 | $0 | $0 |
| ROBIN M BOWMAN MD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| DOUG BURNS | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ELLEN FREMION MD FAAP FACP | DIRECTOR Trustee or director | 2 | $0 | $0 |
| TRACY DINUNZIO | DIRECTOR Trustee or director | 2 | $0 | $0 |
| CHASE PHILLIPS | DIRECTOR Trustee or director | 2 | $0 | $0 |
| KATHRYN ANN NAVARETTE SMITH RN MN | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ERIC TOBIN | DIRECTOR Trustee or director | 2 | $0 | $0 |
| BRYAN VODICKA | DIRECTOR Trustee or director | 2 | $0 | $0 |
| DAWNE WIDENER-BURROWS | DIRECTOR Trustee or director | 2 | $0 | $0 |
| JOHN WIENER MD | DIRECTOR Trustee or director | 2 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 2000 DUKE ST STE 300, ALEXANDRIA, VA 22314-6116
- In care of
- % SARA STRUWE
- Principal officer (990 for 2025)
- SARA STRUWE, 2000 DUKE STREET SUITE 300, ALEXANDRIA, VA 22314
- Signed the 990
- SARA STRUWE, PRESIDENT AND CEO
- Phone
- (202) 618-4750
- Return prepared by
- RENNER AND COMPANY CPA PC
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.
Program accomplishments
- 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.Expenses $503,936 · revenue $106,807
- 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.Expenses $499,748
- 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.Expenses $161,505
- 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.Expenses $304,991 · revenue $328,312
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 58-1342181
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (509(a)(2))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1973
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G55Z)
- Assets (IRS master file)
- $769,226
- Income (IRS master file)
- $2,034,312
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $1,911,274 | $1,859,428 | $769,226 | XML |
| 990 | December 2024 | $1,942,830 | $2,045,054 | $714,042 | XML |
| 990 | December 2023 | $2,834,510 | $3,175,550 | $1,019,508 | XML |
| 990 | December 2022 | $2,183,431 | $2,305,814 | $1,417,977 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 58-1342181).
Questions about SPINA BIFIDA ASSOCIATION OF AMERICA
- What is the EIN of SPINA BIFIDA ASSOCIATION OF AMERICA?
- The employer identification number (EIN) of SPINA BIFIDA ASSOCIATION OF AMERICA is 58-1342181.
- Is SPINA BIFIDA ASSOCIATION OF AMERICA tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1973.
- Are donations to SPINA BIFIDA ASSOCIATION OF AMERICA tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does SPINA BIFIDA ASSOCIATION OF AMERICA file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of SPINA BIFIDA ASSOCIATION OF AMERICA due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did SPINA BIFIDA ASSOCIATION OF AMERICA last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of SPINA BIFIDA ASSOCIATION OF AMERICA?
- The 990 for the year ended December 31, 2025 names SARA STRUWE.
- Who are the officers and directors of SPINA BIFIDA ASSOCIATION OF AMERICA?
- The 990 for the year ended December 31, 2025 lists 18 people; 2 received compensation from the organization, the highest $135,044 (SARA STRUWE, PRESIDENT AND CEO).
- How much revenue does SPINA BIFIDA ASSOCIATION OF AMERICA have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $1,911,274, expenses of $1,859,428 and total assets of $769,226 at year end.
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