Missouri · Nonprofit
FABRY SUPPORT & INFORMATION GROUP
FABRY SUPPORT & INFORMATION GROUP (Missouri) receives grants from 8 organizations whose IRS filings report $28,209 to it, the largest being NATIONAL FABRY DISEASE FOUNDATION ($20,000). 4 of them have funded it in more than one year.
- Revenue FY2025
- $571k
- Funders on record
- 8
- Grants received
- $28k
- Net assets
- $749k
What Fabry Support & Information Group does
Mission
Our mission is to provide information, advocacy, education, and compassionate support to improve the quality of life and care for those individuals suffering with Fabry.
As stated on its FY2025 Form 990.
Programs
PATIENT MEETINGS-FSIG brings educational and support meetings directly to Fabry patients and families, many of whom face challenges traveling long distances. These meetings provide up-to-date information from medical and industry professionals and offer opportunities for peer support. In 2025, FSIG hosted meetings in multiple U.S. cities, reaching approximately 200 patients and family members.
$228,364 spent$256,940 earned by the program58% of program spendingWEBSITE EDUCATION - FSIG maintains an online platform that connects Fabry patients and caregivers, providing reliable educational resources and opportunities for peer support. In 2025, the website received 20,815 visits and continued to serve as a trusted source of Fabry-related information.
$2,867 spent$5,500 earned by the program1% of program spendingEXPERT FABRY CONFERENCE FEFC-FSIG organizes the annual Expert Fabry Conference, offering patients, families, and professionals the opportunity to learn about the latest research and treatment options. In 2025, approximately 113 attendees participated in the conference, which included presentations from leading medical experts.
$109,577 spent$143,839 earned by the program28% of program spendingProgram Service Expenses 34,346, Grants and allocations 0, Revenue 40,000 FABRY ASSIST FORMERLY RAFT-FSIG provides financial assistance to individuals and families facing temporary hardships related to Fabry disease. Support may include bridging to longer-term programs, access to educational opportunities, or help with other essential needs. No assistance is provided for treatment drugs.In 2025, FSIG helped Fabry patients 69 times with financial assistance. Program Service Expenses 16,733, Grants and allocations 0, Revenue 38,000 NEWSLETTERS - FSIG publishes three newsletters every year to keep patients, families, and healthcare professionals informed of recent developments in Fabry research, treatments, and community news. In 2025, approximately 6,131 newsletters were distributed electronically and in print. Program Service Expenses 489, Grants and allocations 0, Revenue 168 COOLING VEST PROGRAM - Because many Fabry patients cannot sweat and are at risk in hot environments, FSIG provides cooling vests to improve comfort and safety. In 2025, FSIG distributed 9 cooling vests to patients in need. Program Service Expenses 1,200, Grants and allocations 0, Revenue 12,000 INFORMATION…
$52,998 spent$95,168 earned by the program13% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $393,806.
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 2020 to 2021, from $456k to $634k (+39%).
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.
40% of FABRY SUPPORT & INFORMATION GROUP’s revenue is contributions — about as donation-reliant as the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 1 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
Lisa Bacon
Executive director
As listed on its FY2025 Form 990.
The chief executive listed changed between the FY2024 and FY2025 filings.
Who funds it, year by year
2017 → 2023: the base held at 3 funders, grant income fell $2k → $496.
1 of 8 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 3% 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 FABRY SUPPORT & INFORMATION GROUP’s funders (the co-funder graph). 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
FABRY SUPPORT & INFORMATION GROUP leans on a few funders — its largest provides 71% of grant income and the top three 91%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
74% 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 FABRY SUPPORT & INFORMATION GROUP.
Largest funder’s share by year: 2017 48% · 2018 100% · 2019 100% · 2020 58% · 2021 77% · 2022 81% · 2023 50% — 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
33% of FABRY SUPPORT & INFORMATION GROUP's funders are still giving 3 years after their first grant; 50% 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
FABRY SUPPORT & INFORMATION GROUP draws 100% of its grant income from funders outside Missouri, across 5 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $918 arriving through sponsors registered in 1 state 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
FABRY SUPPORT & INFORMATION GROUP holds deeper cash reserves than three-quarters of the 7,883 health nonprofits its size.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like FABRY SUPPORT & INFORMATION GROUP
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 Missouri
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
71% of spending goes to programs.
Governance
Public support
82%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 25 states
Screen this organization
A dated, signed PDF of the compliance screen for FABRY SUPPORT & INFORMATION GROUP: 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 FABRY SUPPORT & INFORMATION GROUP?
- FABRY SUPPORT & INFORMATION GROUP (Missouri) receives grants from 8 organizations whose IRS filings report $28,209 to it, the largest being NATIONAL FABRY DISEASE FOUNDATION ($20,000). 4 of them have funded it in more than one year.
- How many funders does FABRY SUPPORT & INFORMATION GROUP have?
- IRS filings report 8 organizations giving $28,209 in grants to FABRY SUPPORT & INFORMATION GROUP, 4 of which have funded it in more than one year.
- Who is the largest funder of FABRY SUPPORT & INFORMATION GROUP?
- NATIONAL FABRY DISEASE FOUNDATION is the largest funder on record, with $20,000 in grants. The full list of funders is on this page.
- How can an organization like FABRY SUPPORT & INFORMATION GROUP find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Missouri. 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 Fabry Support & Information Group →
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 8 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 14, 2026. What this page cannot tell you · view filing