Virginia · Nonprofit
SPINA BIFIDA ASSOCIATION OF AMERICA
SPINA BIFIDA ASSOCIATION OF AMERICA (Virginia) receives grants from 57 organizations whose IRS filings report $1,994,795 to it, the largest being ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITIES ($435,606). 33 of them have funded it in more than one year.
- Revenue FY2025
- $1.9M
- Funders on record
- 57
- Grants received
- $2.0M
- Net assets
- $715k
What Spina Bifida Association of America does
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.
As stated on its FY2025 Form 990.
Programs
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…
$503,936 spent$106,807 earned by the program34% of program spendingEducationsba 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.
$499,748 spent34% of program spendingPublic 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.
$161,505 spent11% of program spendingChapter development and otherthe association promotes the growth and development of its 14 chapters through technical assistance in capacity building, communications, programmatic resources and grants.
$304,991 spent$328,312 earned by the program21% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $1,470,180.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2017 to 2018, from $860k to $2.0M (+135%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2017 32% · 2018 24% · 2019 35% · 2020 37% · 2021 40% · 2022 41% · 2023 33% · 2024 28% · 2025 27%. Grants only. Government contracts and fees sit inside program revenue.
77% of SPINA BIFIDA ASSOCIATION OF AMERICA’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 5 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Sara Struwe
President and CEO
Board chair
Nancy Gore
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 8 funders to 22 funders, grant income rose $87k → $467k.
14 of 57 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 33% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of SPINA BIFIDA ASSOCIATION OF AMERICA’s funders (the co-funder graph). Top 30 of 57 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
SPINA BIFIDA ASSOCIATION OF AMERICA has a broad base — no single funder exceeds 22% of grant income, and it takes 4 funders to reach half.
the vertical line marks half of all grant income — 4 funders to its left
83% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund SPINA BIFIDA ASSOCIATION OF AMERICA.
Largest funder’s share by year: 2017 38% · 2018 62% · 2019 37% · 2020 27% · 2021 20% · 2022 38% · 2023 49% — growing more concentrated.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
16% of SPINA BIFIDA ASSOCIATION OF AMERICA's funders are still giving 3 years after their first grant; 58% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
SPINA BIFIDA ASSOCIATION OF AMERICA draws 91% of its grant income from funders outside Virginia, across 24 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $664k arriving through sponsors registered in 11 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
SPINA BIFIDA ASSOCIATION OF AMERICA's funding base is broadening — from 8 funders to 22 as grant income climbed.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Government funding SPINA BIFIDA ASSOCIATION OF AMERICA receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $5.4M on record.
- Department of Health and Human Services$5.4M
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like SPINA BIFIDA ASSOCIATION OF AMERICA
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Virginia
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
79% of spending goes to programs.
Governance
Public support
98%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 28 states
Screen this organization
A dated, signed PDF of the compliance screen for SPINA BIFIDA ASSOCIATION OF AMERICA: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds SPINA BIFIDA ASSOCIATION OF AMERICA?
- SPINA BIFIDA ASSOCIATION OF AMERICA (Virginia) receives grants from 57 organizations whose IRS filings report $1,994,795 to it, the largest being ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITIES ($435,606). 33 of them have funded it in more than one year.
- How many funders does SPINA BIFIDA ASSOCIATION OF AMERICA have?
- IRS filings report 57 organizations giving $1,994,795 in grants to SPINA BIFIDA ASSOCIATION OF AMERICA, 33 of which have funded it in more than one year.
- Who is the largest funder of SPINA BIFIDA ASSOCIATION OF AMERICA?
- ASSOCIATION OF UNIVERSITY CENTERS ON DISABILITIES is the largest funder on record, with $435,606 in grants. The full list of funders is on this page.
- How can an organization like SPINA BIFIDA ASSOCIATION OF AMERICA find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Virginia. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds Spina Bifida Association of America →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 57 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing