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.
GLUT1 Deficiency Foundation Inc at a glance
In short: GLUT1 Deficiency Foundation Inc gave $159K across 2 grants in 2025 (avg $79K), mostly in Oregon. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $158,560
- +57.6% vs 2024
- Grants made (2025)
- 2
- +0.0% vs 2024
- Average grant
- $79,280
- +57.6% vs 2024
- Median grant
- $79,280
- Total assets
- $358,299
- -2.1% vs 2024
- Primary geography
- Oregon (63% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who GLUT1 Deficiency Foundation Inc funds
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2025
The largest 2025 recipient was Oregon Health & Science University ($100K). Together the top 2 received $159K.
Grant Size Distribution
12 grants across all recorded years
The most common grant size was under $50K: 8 grants of 12 (67%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 2 itemized grants.
Cities
How GLUT1 Deficiency Foundation Inc gives
- Giving grew 164% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $60K (2022) to $167K (2020). In 2025 it made 2 grants totaling $159K.
Grants by year
Grant recipients and amounts by year
| 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 |
Ready to take the next step with GLUT1 Deficiency Foundation Inc?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $358,299 | $504,749 | $484,095 | $158,560 | 2 | $6,294 |
| 2024 | $365,826 | $514,707 | $608,978 | $100,610 | 2 | $6,126 |
| 2023 | $466,027 | $340,216 | $359,501 | $63,750 | 3 | $3,001 |
| 2022 | $447,949 | $776,976 | $611,811 | $60,000 | 2 | — |
| 2021 | $401,741 | $451,967 | $345,696 | $146,750 | 3 | — |
| 2020 | $489,814 | $357,668 | $285,999 | $167,200 | 4 | — |
About GLUT1 Deficiency Foundation Inc
Based on IRS filings
GLUT1 Deficiency Foundation Inc is a public charity 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
Leadership & Key People
Officers and directors from IRS filings
GLUT1 Deficiency Foundation Inc is led by Glenna Steele, Executive Director on every filing since 2020; 2 of 8 officers listed in 2025 are compensated.
Officers on the 2025 filing
Glenna Steele
Executive Director
On filings since 2020
40 hrs/week
$42K (2020) → $55K (2025)
Rob Rapaport
President
Secretary → President, 2025
On filings since 2020
5 hrs/week
No compensation reported
Sandra Ojeda
Science Director
On filings since 2020
40 hrs/week
$49K (2024) → $51K (2025)
April Breen
Director
Fundraising Director → Director, 2024
On filings since 2020
3 hrs/week
No compensation reported
Erin Meisner
Director
Advocacy Director → Director, 2023
On filings since 2020
3 hrs/week
No compensation reported
Debbie Stoddard
Treasurer
On filings since 2020
3 hrs/week
No compensation reported
Kelly Jones
Vice President
Communications Director → Vice President, 2023
On filings since 2020
3 hrs/week
No compensation reported
Leigh Hopkins
Secretary
Director → Secretary, 2025
On filings since 2023
3 hrs/week
No compensation reported
Former officers (4)
- Former: Maria Rebbecchi (2020–2024) — President
- Former: Sandra Ojeda Torres (2021–2023) — Science Director
- Former: April York (2020–2022) — Vice President
- Former: Jason Meyers (2020–2022) — President
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $55K, to Glenna Steele (Executive Director). 2 officers or directors reported compensation on that filing.
Frequently asked questions about GLUT1 Deficiency Foundation Inc
How much does GLUT1 Deficiency Foundation Inc give each year?
GLUT1 Deficiency Foundation Inc gave $159K across 2 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $101K across 2 grants.
How large is GLUT1 Deficiency Foundation Inc?
GLUT1 Deficiency Foundation Inc reported $358K in total assets on its 2025 IRS Form 990. Its revenue that year was $505K.
What is GLUT1 Deficiency Foundation Inc?
GLUT1 Deficiency Foundation Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Owingsville, KY. It holds $358K in total assets as of 2025.
Where does GLUT1 Deficiency Foundation Inc operate?
GLUT1 Deficiency Foundation Inc has awarded grants in California, Massachusetts, New York, Oregon, Pennsylvania, Texas.
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.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS April 8, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS February 17, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS February 5, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS February 6, 2024)
- 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
Live grants for the work GLUT1 Deficiency Foundation Inc funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in GLUT1 Deficiency Foundation Inc's focus areas in our free grants database
Similar Funders
Similar funders in Kentucky
The Community Foundation of Louisville Inc
Louisville, KY
The Community Foundation of Louisville funds nonprofits across areas including education, arts and culture, health, and community development, with a focus on Louisville and surrounding communities while also supporting work beyond the region. Its 2025 grants ranged from $5,012 to $3,853,691, with a median of $22,987; it states that grant programs for local nonprofits use an open application and review process.
Assets
$766.9M
Grants
678
Total Given
$55.0M
LG&E and Ku Foundation Inc
Louisville, KY
The foundation funds community organizations in economic development, education, the environment, and diversity, as well as event sponsorships and tree-planting grants, primarily in communities served by LG&E and KU. Its 2025 grants ranged from $100 to $749,000, with a median of $2,500; 96% of grant dollars went to Kentucky. It accepts community grant applications through its online portal in March and October.
Assets
$22.0M
Grants
497
Total Given
$4.3M
John B & Brownie Young Memorial Fund
Owensboro, KY
The fund provides scholarships to eligible high school seniors from four Owensboro-area Kentucky school districts for full-time college or vocational/technical study, primarily supporting the first year. Awards are at least $500, with a $500 median grant in 2025; larger awards depend on students’ financial need. Students are notified and receive application information through their school counselor and Independence Bank; the fund does not state whether it accepts unsolicited requests.
Assets
$13.5M
Grants
392
Total Given
$894K
The Community Foundation of Louisville Depository Inc
Louisville, KY
The Community Foundation of Louisville supports a broad range of causes, including arts, parks, education, social services, and libraries, with most 2025 grant dollars going to Kentucky organizations. Its 2025 grants had a median of $15,200 and ranged from $5,100 to over $2.3 million; the available information does not say whether it accepts unsolicited requests.
Assets
$24.0M
Grants
421
Total Given
$20.5M
Blue Grass Community Foundation Inc
Lexington, KY
Blue Grass Community Foundation funds charitable causes and community needs, including education, housing, basic assistance, and youth wellbeing, primarily in Central and Appalachia Kentucky. Its 2025 grants ranged from about $5,000 to $520,000, with a median of about $16,700; the foundation’s website describes competitive grant opportunities but does not state whether it accepts unsolicited requests.
Assets
$296.2M
Grants
514
Total Given
$20.7M
Honorable Order of Kentucky Colonels Inc
Louisville, KY
The Honorable Order of Kentucky Colonels funds Kentucky 501(c)(3) organizations serving Kentuckians, supporting projects in areas such as education, health, community services, arts, and disaster relief. Its 2024 grants ranged from $370 to $500,000, with a median of about $6,000; Good Works applications require a letter of intent, and the profile does not state whether unsolicited requests are accepted.
Assets
$23.5M
Grants
358
Total Given
$4.5M
More similar funders
More Funders in Kentucky
The filing figures on this page are open data under CC BY 4.0. About GrantGraph Open
Figures come from GLUT1 Deficiency Foundation Inc's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
GLUT1 Deficiency Foundation Inc down — hundreds of funders to go?