GLUT1 Deficiency Foundation Inc

EIN: 452190535 501(c)(3) Diseases & Disorders

Owingsville, KY

Total Revenue
$504,749
Total Expenses
$484,095
Total Assets
$358,299
Net Assets
$347,502
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Financial Trends

Organization Details

Formation Year
2011
Legal Domicile
KY
Principal Officer
Glenna Steele
Phone
8592872928
Tax Period
2025-01-01 to 2025-12-31

GLUT1 Deficiency Foundation Inc, founded in 2011, is a small nonprofit in the Diseases & Disorders sector that reported $505K in total revenue in fiscal year 2025. Expenses of $484K left a modest 4% surplus.

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.

Program Service Accomplishments

Program 1
Expenses: $313,254 Revenue: $13,777

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...

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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.

Program 2
Expenses: $85,543

EDUCATION 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...

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EDUCATION 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.

Program 3
Expenses: $10,688

ADVOCACY 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...

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ADVOCACY 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.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2025)

Revenue Breakdown

Contributions & Grants $483,828
Program Service Revenue $13,777
Investment Income $6,294
Other Revenue $850
TOTAL REVENUE $504,749

Expense Breakdown

Grants Paid $149,342
Salaries & Benefits $130,994
Fundraising Expenses $26,519
Program Expenses $409,485
Other Expenses $203,759
TOTAL EXPENSES $484,095

Year-over-Year Comparison

2025 2024 Change
Revenue $504,749 $514,707 0.0%
Expenses $484,095 $608,978 -0.2%
Net Income $20,654 $-94,271 -1.2%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
6
Independent Members
6
Employees
4
Volunteers
15

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
1
$55,000
Total Directors
6
$0
Key Employees
2
$106,000
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Glenna Steele Executive Director 40.00
Officer Key Emp
$55,000 $0 $55,000
Sandra Ojeda Science Director 40.00
Key Emp
$51,000 $0 $51,000
Rob Rapaport President 5.00
Director
$0 $0 $0
Kelly Jones Vice President 3.00
Director
$0 $0 $0
Debbie Stoddard Treasurer 3.00
Director
$0 $0 $0
Erin Meisner Director 3.00
Director
$0 $0 $0
April Breen Director 3.00
Director
$0 $0 $0
Leigh Hopkins Secretary 3.00
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $504,749 $484,095 $358,299 $20,654
2024 $514,707 $608,978 $365,826 $-94,271
2023 $340,216 $359,501 $466,027 $-19,285
2022 $776,976 $611,811 $447,949 $165,165
2021 $451,967 $345,696 $401,741 $106,271
2020 $357,668 $285,999 $489,814 $71,669
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