GLUT1 Deficiency Foundation Inc
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.
Key facts about GLUT1 Deficiency Foundation Inc
- EIN
- 45-2190535
- Latest 990 filing
- Form 990-PF, 2025
- Annual giving (2025)
- $158,560
- Grants made (2025)
- 2
- Average grant
- $79,280
- Median grant
- $79,280
- Total assets
- $358,299
- Primary geography
- Oregon (63% of itemized 2025 grant dollars)
Data from IRS Form 990-PF, 2025; updated September 2026.
Next steps with GLUT1 Deficiency Foundation Inc
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Financial Overview
From 2025 IRS Form 990-PF · View filing
Total Assets
$358K
-2.1% YoY
Annual Giving
$159K
+57.6% YoY
Grant Count
2
+0.0% YoY
Avg Grant Size
$79K
+57.6% YoY
About GLUT1 Deficiency Foundation Inc
Based on IRS filings
GLUT1 Deficiency Foundation Inc is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in Owingsville, KY. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $358K in total assets. In 2025, it awarded 2 grants totaling $159K. Net investment income was $6K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of all 2 itemized 2025 grant dollars.
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $358,299 | $365,826 | $466,027 |
| Revenue | $504,749 | $514,707 | $340,216 |
| Expenses | $484,095 | $608,978 | $359,501 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $6,294 | $6,126 | $3,001 |
| Distributable Amount | — | — | — |
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2024 (received by the IRS March 13, 2025)
- Updated Form 990 for fiscal year 2025 (received by the IRS February 7, 2026)
- IRS filings on file for fiscal years 2020–2025
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2025
Grant Size Distribution
4 grants across all recorded years
Giving History
Grant recipients and amounts by year
Among its reported 2025 grants, the largest recipients include Oregon Health & Science University ($100,000), Weill Medical College of Cornell Un ($58,560).
| Recipient | Purpose | Amount |
|---|---|---|
| Oregon Health & Science University Portland, OR | For clinical trial support | $100,000 |
| Weill Medical College of Cornell Un New York, NY | Research project support | $58,560 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2025 IRS filing
From 2025 IRS filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| Glenna Steele | Executive Director | 40 | $55,000 |
| Sandra Ojeda | Science Director | 40 | $51,000 |
| Rob Rapaport | President | 5 | — |
| Kelly Jones | Vice President | 3 | — |
| Debbie Stoddard | Treasurer | 3 | — |
| Erin Meisner | Director | 3 | — |
| April Breen | Director | 3 | — |
| Leigh Hopkins | Secretary | 3 | — |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is GLUT1 Deficiency Foundation Inc?
GLUT1 Deficiency Foundation Inc is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in Owingsville, KY. It holds $358K in total assets as of 2025.
How large is GLUT1 Deficiency Foundation Inc?
As of 2025, GLUT1 Deficiency Foundation Inc holds $358K in total assets with $505K in annual revenue. It awarded 2 grants totaling $159K in 2025.
Where does GLUT1 Deficiency Foundation Inc operate?
GLUT1 Deficiency Foundation Inc has awarded grants in New York, Oregon, Pennsylvania, Texas.
What size grants does GLUT1 Deficiency Foundation Inc award?
In 2025, GLUT1 Deficiency Foundation Inc awarded 2 grants totaling $159K — an average of about $79K per grant, based on its IRS Form 990 filings.
What is GLUT1 Deficiency Foundation Inc's EIN?
GLUT1 Deficiency Foundation Inc's EIN (Employer Identification Number) is 45-2190535. IRS Form 990 filing data is available on this page for 2020–2025.
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Data last updated September 2026. Sourced from IRS Form 990-PF filings.