Illinois · Nonprofit
FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA
FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA (Illinois) receives grants from 159 organizations whose IRS filings report $8,785,378 to it, the largest being LUKE 181 FOUNDATION ($2,993,043). 85 of them have funded it in more than one year.
- Revenue FY2025
- $15M
- Funders on record
- 159
- Grants received
- $8.8M
- Net assets
- $7.4M
What Families of Spinal Muscular Atrophy Dba Cure Sma does
Mission
Our mission is to drive research for treatments and a cure for sma, and to support and empower everyone impacted by sma today.
As stated on its FY2025 Form 990.
Programs
Individuals with sma need specialized care and equipment, which can put enormous logistical and financial pressure on families. Cure sma is committed to making sure that families have the best, most accurate information about sma and what it means for them, and to making sure that they understand all the options and resources available to them from day-to-day care to the changing landscape of research breakthroughs and treatments. This includes our care series booklets, which are sent out as part of informational packets available at no cost to anyone who requests one. Developed by medical experts and reviewed by families, these booklets cover topics such as breathing, nutrition, palliative care, genetics, musculoskeletal issues, and more. In addition, our equipment pool gives families access to specialized items like car beds, strollers and bathing systems at no cost. Every newly-diagnosed family receives a care package from cure sma, full of toys appropriate to the child's type of the disease, impartial information for parents, and useful items suggested by other sma parents based on their own experiences. Every new adult to the community receives a packages of special…
$2,342,300 spentof which $495,608 as grants$36,109 earned by the program19% of program spendingCure sma focuses on three different yet equally critical and interdependent research areas: basic research, to understand the cause and biology of sma; drug discovery, to convert basic research ideas into practical new drug candidates; and clinical & regulatory research, to provide the infrastructure to test the drug candidates. During this period cure sma funded six new and six ongoing basic research grants. We also funded and executed multiple clinical and regulatory focused projects, to increase sma clinical trial site capacity and readiness, to provide regulatory authorities with data on the sma population and their reported unmet needs, to identify potential biomarkers for sma, and to collect data to understand the patient experience with sma. Currently, there are three approved drugs for sma, with another several dozen drug programs in development, including eight in clinical trials. Cure sma supported clinical care data collection to better understand sma care. The cure sma care center network kicked off in 2018. The goal of the sma care center network is to gather and then disseminate new knowledge to advance the sma standard of care for pediatric and adult persons. In…
$2,976,714 spentof which $1,465,102 as grants$1,592,111 earned by the program24% of program spendingWe hosted the 2024 annual sma conference in austin, tx, with over 1,975 registered attendees. Our annual conference is an invaluable resource for the entire sma community. The conference is the largest in the world focused specifically on sma. The researcher and clinical care conference attracted the top scientists and companies in the field. The community conference includes a variety of workshops, keynote sessions with leading experts, and more-plus great events such as our teen and adults with sma socials, the family friendly researcher poster session and our meet & greet with a family fun fest. The researcher conference creates open communication of early, unpublished scientific data, accelerating the pace of research. The meeting also furthers research by building productive collaborations-including cross-disciplinary dialogue, partnerships, integration of new researchers and drug companies, and educational opportunities for junior researchers. Community attendees have direct access to the latest information about research, and researchers have an opportunity to build personal connections with the patients who will benefit from their work.
$7,083,053 spentof which $101,596 as grants$5,396,008 earned by the program57% of program spending
The 3 programs described on its FY2023 Form 990, listed largest first by expense. Program spending in total: $12,402,067.
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 $5.0M to $8.2M (+64%).
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: 2021 7% · 2022 14%. Grants only. Government contracts and fees sit inside program revenue.
50% of FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA’s revenue is contributions — more reliant on donations than three-quarters of its peers (7% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 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.
Board chair
Nick Farrell
Board chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 36 funders to 57 funders, grant income rose $245k → $1.1M.
26 of 159 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 39% 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 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA’s funders (the co-funder graph). Top 30 of 159 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
FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA has a broad base — no single funder exceeds 34% of grant income, and it takes 3 funders to reach half.
the vertical line marks half of all grant income — 3 funders to its left
77% 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 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA.
Largest funder’s share by year: 2017 22% · 2018 61% · 2019 31% · 2020 40% · 2021 39% · 2022 41% · 2023 42% — 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
42% of FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA's funders are still giving 3 years after their first grant; 53% 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
FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA draws 95% of its grant income from funders outside Illinois, across 31 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $3.4M arriving through sponsors registered in 18 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
FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA runs a healthier operating margin than half of the 2,969 health nonprofits its size.
this organization peer median middle 50% of peers· 2,969 health nonprofits $10M–$100M, FY2025
Government funding FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $40k on record — $40k federal, $410 state.
- Department of Health and Human Services$40k
- REFUNDS - GENERAL $410
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 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA
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 Illinois
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
77% of spending goes to programs.
Governance
Public support
57%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 38 states
Screen this organization
A dated, signed PDF of the compliance screen for FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA: 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 FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA?
- FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA (Illinois) receives grants from 159 organizations whose IRS filings report $8,785,378 to it, the largest being LUKE 181 FOUNDATION ($2,993,043). 85 of them have funded it in more than one year.
- How many funders does FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA have?
- IRS filings report 159 organizations giving $8,785,378 in grants to FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA, 85 of which have funded it in more than one year.
- Who is the largest funder of FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA?
- LUKE 181 FOUNDATION is the largest funder on record, with $2,993,043 in grants. The full list of funders is on this page.
- How can an organization like FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Illinois. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
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 159 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