Kentucky · Nonprofit
GLUT1 Deficiency Foundation Inc
GLUT1 Deficiency Foundation Inc (Kentucky) receives grants from 32 organizations whose IRS filings report $1,063,991 to it, the largest being Silicon Valley Community Foundation ($615,000). 14 of them have funded it in more than one year, and 90% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $505k
- Funders on record
- 32
- Grants received
- $1.1M
- Net assets
- $348k
What GLUT1 Deficiency Foundation Inc does
Mission
The GLUT1 Deficiency Foundation is a parent-led patient advocacy organizatino dedicated to bringing help and hope to the GLUT1 Deficiency community through increased awareness, improved education, advocacy for patients and families, and support and funding for research.
As stated on its FY2025 Form 990.
Programs
RESEARCH SUPPORT: The GLUT1 Deficiency Foundation supports research to advance understanding of GLUT1 Deficiency and accelerate the development of improved treatments. The Foundation awards seed grants to investigators whose projects align with patient-driven priorities identified through our collaborative Research Compass. In 2025, G1DF funded four research projects totaling $167,110. Funds from one previously awarded grant ($17,768) were returned following the investigators relocation. Additional research investments supported the development of open-source research tools, participation in scientific meetings, and the Foundations first in-person Research Workshop. G1DF completed its PCORI-funded Research Ready Series, which provided research fundamentals training to patients, families, and other stakeholders. The G1DF also continues to collect and store biospecimens for research use, gather patient-reported data through an ongoing natural history study, and build a collaborative research network to drive progress.
$313,254 spentof which $167,110 as grants$13,777 earned by the program76% of program spendingEDUCATION AND AWARENESS: The GLUT1 Deficiency Foundation has several outreach programs to help raise awareness and improve education among stakeholders in the community. In 2025, we hosted educational exhibits at 3 professional meetings to educate healthcare professionals in a position to diagnosed patients or improve care. We helped with a global symposium for ketogenic dietary therapies and the European GLUT1 Conference as a nonprofit sponsor. We created new resources for our website and updated our brochure which is available in digitial and print form. Informational packets were created and mailed to 80 newly diagnosed families.
$85,543 spent21% of program spendingADVOCACY AND SUPPORT: Monthly virtual meetings were held on Zoom for parents and caregivers, in both English and Spanish sessions. Monthly meetings were also held for tween and teenage patients and for adult patients. A private Facebook group is managed as a place for the community to get information and support. We had 1:1 consultation sessions available for school support, behavior support, ketogenic diet support, and peer support. The G1DF launched our Collaborative Care Network to identify centers who provide high quality, patient-centered care and work collaboratively across the network to improve outcomes. rare disease community.
$10,688 spent3% of program spending
The 3 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $409,485.
The organization over time
Each line starts at 100 in 2020, so what you read is the shape rather than the size: 150 means half as much again as 2020, 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 2023 to 2024, from $466k to $366k (−22%).
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: 2020 3% · 2025 1%. Grants only. Government contracts and fees sit inside program revenue.
96% of GLUT1 Deficiency Foundation Inc’s revenue is contributions — more donation-reliant than the typical peer (83% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 6 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
Glenna Steele
Executive Director
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 3 funders to 12 funders, grant income rose $16k → $73k.
14 of 32 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 90% 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 GLUT1 Deficiency Foundation Inc’s funders (the co-funder graph). Top 30 of 32 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
GLUT1 Deficiency Foundation Inc leans on a few funders — its largest provides 58% of grant income and the top three 75%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
90% 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 GLUT1 Deficiency Foundation Inc.
Largest funder’s share by year: 2017 95% · 2018 63% · 2019 98% · 2020 93% · 2021 38% · 2022 75% · 2023 28% — diversifying over time.
“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
25% of GLUT1 Deficiency Foundation Inc's funders are still giving 3 years after their first grant; 44% 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
90% of GLUT1 Deficiency Foundation Inc's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $110k that is directly attributable, 100% of it comes from funders outside Kentucky, across 13 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $954k arriving through sponsors registered in 13 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
GLUT1 Deficiency Foundation Inc is better cushioned than half of the 8,464 health nonprofits its size.
this organization peer median middle 50% of peers· 8,464 health nonprofits $100k–$1M, FY2025
Organizations like GLUT1 Deficiency Foundation Inc
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 Kentucky
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
85% of spending goes to programs.
Governance
Public support
100%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for GLUT1 Deficiency Foundation Inc: 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 GLUT1 Deficiency Foundation Inc?
- GLUT1 Deficiency Foundation Inc (Kentucky) receives grants from 32 organizations whose IRS filings report $1,063,991 to it, the largest being Silicon Valley Community Foundation ($615,000). 14 of them have funded it in more than one year, and 90% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does GLUT1 Deficiency Foundation Inc have?
- IRS filings report 32 organizations giving $1,063,991 in grants to GLUT1 Deficiency Foundation Inc, 14 of which have funded it in more than one year.
- Who is the largest funder of GLUT1 Deficiency Foundation Inc?
- Silicon Valley Community Foundation is the largest funder on record, with $615,000 in grants. The full list of funders is on this page.
- How can an organization like GLUT1 Deficiency Foundation Inc find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Kentucky. 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 2020–2025), and the filings of 32 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