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Glut1 Deficiency Foundation Inc

EIN 45-2190535 · Owingsville, KY

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood88 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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.

Income
$504,749
Spending
$484,095
Spent on programs
85%
Reserves
8.6 months of spending
Largest source of income
donations and private grants, 95%
Employees
4
Volunteers
15
Highest pay
$55,000, executive director

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 88 out of 100. Higher than 62% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    28 of 35

    Spendable reserves would cover 8.6 months of spending.

  • Debt

    20 of 20

    It owes 3% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 4% of income.

  • Income trend

    10 of 15

    Income fell 2% on the year before.

  • Spending floor

    15 of 15

    85% of spending went to programs and raising each dollar of donations cost 5 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 92% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    6 of 6 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $313,254 spent. 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.
  2. $85,543 spent. 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.
  3. $10,688 spent. 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.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since October 2011.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.