Mission
The Glut1 Deficiency Foundation provides support and resources for patients and families affected by Glut1 Deficiency, a rare genetic condition that impairs brain metabolism. The Foundation works to improve diagnosis, treatment, and research efforts, empowering patients and fostering collaboration within the scientific community to improve lives and work towards finding a cure.
Basic Information
Founded in
2011
EIN
45-2190535
Total Assets
$466 thousand
UN Sustainable Development Goals Supported
This organization contributes to the following United Nations Sustainable Development Goals. See the SDG page for more information.
At a Glance

Awareness and Education Initiatives
Programs aimed at raising awareness about Glut1 Deficiency and educating healthcare providers.

Research Roundtables
Quarterly forums for scientists and clinicians to discuss progress in research.

Million Dollar Bike Ride
Annual event to raise funds for Glut1 Deficiency research.
Impact Stats
Total Funding
Annual Research Funding
Provided funding for research projects to advance understanding of Glut1 Deficiency.
Community Members
Community Connections
Connected over 1,500 families, patients, doctors, dietitians, and researchers.
Participants in Survey
Collective Voices Project
Surveyed 260 patients and families to gather insights on their experiences.
Past Events
2024 Glut1 Deficiency Conference
2024-06-15
Annual conference bringing together patients, families, healthcare professionals, and researchers.
Fall Research Roundtable
2024-11-05
Quarterly meeting for discussing patient care and research updates.
Upcoming Events

2026 GLUT1 Deficiency Summit
2026-06-10
Biennial summit to convene the Glut1 Deficiency community in Asheville, North Carolina.
Learn More
Inaugural Research Workshop
2025-07-24
Workshop to foster collaborative research efforts and share updates.
Learn MoreOur Programs
Volunteer Opportunities
Community Outreach Volunteer
Engage with families and promote awareness about Glut1 Deficiency.
Learn MoreTestimonials
"The Glut1 Deficiency Foundation has been a lifeline for our family. Their support and resources helped us navigate our journey."
Sarah Johnson
Parent
"Collaborating with the Glut1 Deficiency Foundation has been instrumental in advancing research efforts and improving patient care."
Dr. Alex Smith
Researcher
Impact Reports
MIP Score (Beta)
The MIP Score is in beta! We'd love any feedback you may have.
The MIP Score and it's methodology is purely used as a way to visualize how a nonprofits public financial data compares against others. It doesn't reflect the unique circumstances and impact that a nonprofit has.The MIP Score should never be used to say one charity is better than another.
Overall Score
57
54
/100
Program Expense Ratio
85.93%
18
/20
Program Revenue Growth
-92.75%
2
/20
Leverage Ratio
0.09636
20
/20
Working Capital Ratio
1.171
12
/20
Fundraising Efficiency
0
2
/20
Latest Filing Data: Form 990
Fiscal Year:2023
Source:Source: Self-reported by organization
Financial Details
Revenue
Category | Amount | Percentage |
---|---|---|
Contributions, Gifts, and Grants | 333.5K | 98.01% |
Program Services | 2.638K | 0.78% |
Investment Income | 3.001K | 0.88% |
Sales of Non-Inventory Assets | 0 | 0.00% |
Other Notable Sources | 1.125K | 0.33% |
Total Revenue | 340.2K | 100.00% |