GLUT1 Deficiency Foundation Inc

Nonprofit profile at a glance

EIN
452190535
IRS 990 coverage
2020–2025
Forms available
Form 990 2025, Form 990-N 2011
Location
Owingsville, KY, USA
Phone
8592872928
Rating
79
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$504,749
Expenses
$484,095
Assets
$358,299
Liabilities
$10,797

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

8 people listed

Executive titles in this filing

  • Glenna Steele (Executive Director)
  • Rob Rapaport (President)
  • Kelly Jones (Vice President)

Highest reported compensation

  • Glenna Steele (Executive Director): $55,000 total reported compensation
  • Sandra Ojeda (Science Director): $51,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2025

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.

Operating model

Revenue model
Donor-supported. 95% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 64% for direct work, and 36% for grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 79
  • Transparency & Controls: 71
  • Accountability: 100
  • Sustainability: 37
  • Growth: 80

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 81.4%; rating input score 81
  • Program expense ratio: 84.6%; rating input score 85
  • Fundraising efficiency: $18.24 raised per $1 spent on fundraising; rating input score 53; 53rd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 92.3%; rating input score 92; 18th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 0 of 8 controls in place; rating input score 0
    • Claims monitoring procedures: Fail
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 100%; rating input score 100; 78th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 9 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 4.1%; rating input score 42; 42nd percentile among comparable filings
  • Total-asset coverage ratio: 0.74; rating input score 34; 34th percentile among comparable filings
  • Liabilities to assets ratio: 0.03; rating input score 49; 49th percentile among comparable filings
  • Officer compensation ratio: 21.9%; rating input score 14; 14th percentile among comparable filings

Growth

  • Program expense growth: 8.9% per year; rating input score 100; 53rd percentile among comparable filings
  • Revenue growth: 2.8% per year; rating input score 100; 24th percentile among comparable filings
  • Asset growth: -5.1% per year; rating input score 0; 6th percentile among comparable filings

Details

  • Where the money goes: 81.4% of revenue deployed · 84.6% of spending went to programs
  • Governance: 6 of 6 board members independent · 9 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $409K in reported program spending
  • Leadership: top reported pay $55K · 8 people listed
  • Consistency: 27 of 28 current checks pass · 1 finding to review
  • Schedules: 6 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 6 filing years from 2020 to 2025
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • Related organizations: 2 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Foreign activity oversight: 8 of 8 not reported.
  • Review — Financial Efficiency: Fundraising efficiency scored 53/100.
  • Moderate — Sustainability: Operating margin scored 42/100.
  • High — Growth: Asset growth scored 0/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 34/100.
  • High — Sustainability: Officer compensation ratio scored 14/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Moderate — Sustainability: Liabilities to assets ratio scored 49/100.